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A Best Buddies Story: Timothy Rosario

Meet Timothy Rosario, who is thrilled to have become a Best Buddies Ambassador this spring. He’s looking forward to the difference he can make by being part of this amazing organization, by giving speeches, encouraging more people to join and helping out at special events.

 
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Below, Tim talks about why he was chosen to be a Best Buddies Ambassador, his aspirations for the future and one of his favorite Best Buddies memories so far.

Best Buddies Ambassador Timothy Rosario

MTEAM: Tell us a little bit about yourself!
TIMOTHY ROSARIO:
 My name is Tim Rosario. I am from Somerset Massachusetts. Last year, I was involved in Best Buddies. I am also attending Bridgewater State University. I had gotten into a special Program and it’s called the Inclusive Concurrent Enrollment Initiative. Besides college, I like to bowl and hang out with my friends. 

Best Buddies Ambassador Timothy Rosario

MTEAM: When and how did you become an ambassador for Best Buddies?
TR:
I had gotten asked to become an Ambassador on April 7, 2018, because I had taken a Public Speaking class. 

Best Buddies Ambassador Timothy Rosario

MTEAM: What are some of the coolest things you (will) get to do as an ambassador for Best Buddies?
TR:
I will get to make speeches to other people if they asked me to and attend special events that they will have.

Best Buddies Ambassador Timothy Rosario

MTEAM: What do you love most about the Best Buddies? How have they helped to support you?
TR:
I absolutely love the Best Buddies staff. They helped me make lots of new friends. 

Best Buddies Ambassador Timothy Rosario

MTEAM: Have you had any particular challenges or goals in your life that being involved with Best Buddies has helped you overcome or achieve?
TR:
Someday I want to work for Best Buddies through the job program that they have.

Best Buddies Ambassador Timothy Rosario

MTEAM: How was your experience at the most recent Best Buddies Leadership conference? What did you learn while you were there? 
TR:
This year, I had attended the annual Best Buddies Leadership Conference all by myself. I met Jack Mayor (another Best Buddies Ambassador) while I was there. They had helped me write my speech.

Best Buddies Ambassador Timothy Rosario

MTEAM: Have you met anyone through Best Buddies who really inspires you? Who?
TR:
Back in 2017, I attended the Pass the Torch Conference. There I met a friend and his name was Paul Landry. He became really close to me and to this day we talk, by texting or Snapchat.

Best Buddies Ambassador Timothy Rosario

MTEAM: How do you hope to make a difference through your role as a Best Buddies Ambassador? 
TR:
I will try to recruit more people to do Best Buddies. Some people have never even heard of Best Buddies.

Best Buddies Ambassador Timothy Rosario

MTEAM: Do you have a favorite memory from your time involved with Best Buddies?
TR:
Last year was the first year doing Best Buddies at my local high school. On September 23, 2017, we had the Best Buddies Friendship Walk, and if you raised $500 or more, your name was put in the raffle. I won that raffle so the Best Buddies staff came to my high school to proudly present a football signed and autographed by Tom Brady. 

Best Buddies Ambassador Timothy Rosario

MTEAM: What would you say to someone who was thinking about supporting Best Buddies but is not sure? 
TR:
I would say you should join Best Buddies because you never know you can impact someone’s life.

Candyce Carragher
10 Minutes with: Jennifer Leonard

As November is FOXG1 Awareness Month, we thought it would be a great time to introduce Jennifer Leonard, the Director of Family Advocacy for the International FOXG1 Foundation.

 
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Below, she tells us a bit about what her roll involves, give some solid advice for families finding out about a FOXG1 diagnosis and shares a little bit about what life is like with her family, including her daughter Abigail who was born with FOXG1.

 Abigail in her new to us wheelchair van after fundraising for over one year!

Abigail in her new to us wheelchair van after fundraising for over one year!

MTEAM: Tell us a bit about yourself and your family.
JENNIFER LEONARD:
My name is Jennifer Leonard. I'm from Pennsylvania, transplanted to Massachusetts. I'm married to Jed and we have two children, Abigail, (age 11) and Corinne, (age 9). I enjoy reading when I have time, travelling (although there's not a lot of time for that right now!). My guilty pleasure is watching General Hospital.   

 Abigail and Meredith Lewis at Miracle League

Abigail and Meredith Lewis at Miracle League

MTEAM: You hold an important position as the Director of Family Advocacy for the International FOXG1 Foundation. For those who have never heard of FOXG1, can you help us understand a bit about what it is and how it manifests itself?
JL:
FOXG1 Syndrome is a rare neuro-developmental disorder caused by mutation on the 14th chromosome. It impacts brain development and function and can be a cause of seizures. 

Most cases of FOXG1 are considered de novo, meaning they just occurred during the early development in utero. In some cases, a parent can be a carrier, but most cases are non inherited and have no family history.

FOXG1 can cause lack of speech, inability to control body movements, vision issues. Many of the people diagnosed with FOXG1 Syndrome cannot walk, talk, and cannot take care of their daily needs on their own.      

 Abigail and her sister Corinne

Abigail and her sister Corinne

MTEAM: November is FOXG1 Awareness Month. Can you tell us more about what the International FOXG1 Foundation does, perhaps what is in focus at the moment and some of its achievements?
JL:
The International FOXG1 Foundation's (IFF) mission is to provide hope and support to the families of individuals with FOXG1, to fund research and to bring awareness and education to the public. IFF helps our families understand all the information that gets thrown at them with a FOXG1 diagnosis, from the symptoms that can come with a diagnosis and any new medical information that is available. 

One of the things that the IFF has been able to do has been to fund the creation of what is called a knockout mouse - basically a mouse that can be bred to have FOXG1 so researchers can understand how FOXG1 affects the mouse and then can understand the characteristics of the disorder. It can help with treatments for the symptoms of FOXG1. 

IFF recently entered into contract with the Harvard Brain Tissue Research Center (HBTRC) and is working with Boston Children's Hospital on research projects. IFF is involved with a Consortium where clinicians are collecting information for a National Institute of Health funded natural history study of the related disorders. 

A long term goal is to open a clinic where clinicians will be able to see patients with FOXG1 in a sort of "one stop" visit. Meaning the patient will see all their specialists in one day of visits instead of making multiple appointments on different days.

 Abigail as "Dizzy" from Disney Descendants 2 for Halloween 2018

Abigail as "Dizzy" from Disney Descendants 2 for Halloween 2018

MTEAM: What is a typical day at the International FOXG1 Foundation like for you?
JL:
One of my main roles as Director of Family Advocacy is to work with families to make sure they have what they need. I like to try and connect families with other families in their geographic location. I also try to help when a family needs to find a medical professional that can treat their child. I'm the liaison for IFF with the Natural History Consortium which allows me the ability to get to know others from different foundations and the clinicians and researchers involved in consortium work. I'm lucky to live in an area where there are so many doctors and researchers interested in our kids.

 
 Abigail in her dance recital costume

Abigail in her dance recital costume

 

MTEAM: How has FOXG1 touched your own life?
JL:
When you're pregnant with a child, you dream of all the things they'll do, how they'll grow up and the way they'll be. Having a diagnosis of FOXG1 changes all of that in a heartbeat. At the time of Abigail's diagnosis, there was very little information for parents. Dr. Google wasn't much help; if anything, it makes it worse. Finding the parent group and the International FOXG1 Foundation opened our world up to other people who "get" our life and help celebrate the all the little milestones that others take for granted.
NOTE: Click through to a more in depth version of Jennifer and Abigail’s birth story and diagnosis.

 Abigail's First Communion family picture

Abigail's First Communion family picture

MTEAM: Tell us a bit more about Abigail and her personality!
JL:
Abigail is 11-years-old and has a very big personality. She loves her sister, her cats, playing with her friends. She also loves a good joke and listening to music. She can be naughty when she wants to (she loves to pull items off tables or get a little fresh if someone is standing too close to her reach!). Telling her to stop, or no, gets a big grin of defiance. In general, Abigail's a pretty happy kid, but she's getting into the "tween" years and it's fun (and annoying!) to see the typical tween attitude come out. Her unique ability to connect with others with a smile is pretty fun to watch. Even the grumpy person can't resist an Abigail smile and giggle. If Abigail likes someone, she'll do her best to get that person's attention and will intentionally listen to them. If she doesn't like you, you'll see the shoulder shrugs, head down and no smiles. She can be pretty convincing when she wants, especially if she wants something!

 Halloween 2018 in Abigail's classroom with her friends and awesome teachers and physical therapist!

Halloween 2018 in Abigail's classroom with her friends and awesome teachers and physical therapist!

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with FOXG1 so far?
JL:
There are always ups and downs with any person who has such complex medical issues. The past 12 months have been very challenging. Abigail went from being a kid that ate and drank pretty much everything we gave her to a child that needed a feeding tube placed, a swallow study that showed she was aspirating thin fluids, food aversions and gagging, new and uncontrolled seizures, and a GI issue the doctors thought might need surgery. She had four inpatient stays in a 365 day time frame, which for her, is the most she's ever had within a one year. Trying to juggle her care and the needs of her younger sister, plus everyday life has been very stressful. Seeing the progress she's made, even if it's just a little, since she started feeding therapy is probably the most rewarding. There was a mini celebration when we found out she was finally on the weight growth chart for her age!

 Abigail and Santa 2017

Abigail and Santa 2017

MTEAM: What advice would you offer to other parents who are just finding out about a similar diagnosis?
JL:
I always tell new parents to take a deep breath. It's a lot to take in and make sense of. I tell them to cry, rage, do whatever they need to do, then pick themselves up and stand tall. The journey is a marathon, not a sprint. The lows are bad, but the highs are awesome. Find the team that works for their child, whether it be family, friends, medical people, other special needs parents, etc. Those are the people that will help in the long run. Their child is still the same child they were before the FOXG1 diagnosis, nothing about them changes, it just adds a label to the why. I tell them to seek out the other parents; they're in the same boat and usually know how to get around things and find the services and medical things that may be needed. All our parents in the FOXG1 community are knowledgeable about their child and what works for them. That something may work for another person too. Don't hesitate to ask questions, challenge doctors if you need to, and most importantly, follow that Mom gut, intuition. If something seems off, it usually means something is going on.

 
 Abigail and Corinne

Abigail and Corinne

 

MTEAM: What are some of the key changes that would make the world a more inclusive place for children born with FOXG1?
JL:
Listen to the parents, the people that know the kids/adults with FOXG1. Invite us to the parties, picnics, play dates, even if it seems our kids can't do what you want to do, that doesn't mean they don't enjoy the company and the siblings of kids with FOXG1 definitely enjoy it. Our world got a lot smaller when the diagnosis came; reach out to us. We may not always seem like we appreciate it, but we do. Physical disability doesn't define a person.

 Abigail as Jean Driscoll on 4th grade Wax Museum Day at school

Abigail as Jean Driscoll on 4th grade Wax Museum Day at school

MTEAM: If there was one thing you’d most like the world to know or understand about Abigail or about FOXG1 generally, what would it be?
JL:
Abigail is so smart, as are her friends with FOXG1. These kids are locked in a body that doesn't want to work the way they want it to work. Treat her like a typical 11 year old, ask her questions and wait a few seconds for her to respond. You won't be sorry when you get that big smile or a definite head nod yes or no. It's so worth it if you take the time.  

 
 Chilling at the Stoneham Zoo

Chilling at the Stoneham Zoo

 
Candyce Carragher
Our Favorite Sources for Healthy Recipes

Ah, November. With cold, damp weather already settled in, pumpkin spice latte season in full swing and any resolutions we started the year with long forgotten, we’re finding ourselves tempted by the decadence of rich food connected to the autumn and winter months and the ease of ordering a pizza and wings on a rainy night.

 
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So we’re getting ourselves excited about cooking healthy again (which, if you watch video number 5 in this blog post, you’ll know why) and making feel-good, delicious meals by re-visiting some of our favorite places to find inspirational - and often very easy - recipes to try. Bon appetit!

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BLOGS

  • AMBITIOUS KITCHEN. Monique runs a beautiful health-focused food blog with clean photography, creative recipes and feel good inspiration.

  • LOVE AND LEMONS. Chicago-based couple Jeanie and Jack lean toward vegetarian cooking for their family, so lots of delicious veggies to be found here. Search by ingredient or find inspiration by season.

  • SASSY KITCHEN. Julia presents the world with her seasonal, wholefoods that just happen to be gluten-free. She’s also sensitive to special diets. Not updated very often now, but a nice archive to browse.

  • MY DARLING LEMON THYME. Besides the catchy name, Emma’s blog is well worth a visit for her lovely collection of gluten-free vegetarian recipes.

  • LOCAL MILK. Though not fully dedicated to healthy eating, Beth has created a beautiful slice of internet dedicated to slow living, including recipes that can be searched by ingredient or special diet. Lots of healthy meals are included.

  • DISHING UP THE DIRT. Andrea shares her beautiful farm-to-table lifestyle from her land in Oregon. You can filter recipes by season or type of veg.

  • SMITTEN KITCHEN. Deb shares a wide range of recipes here, but there are lots of gluten free, vegetarian and generally healthy options to be found if you don’t mind being tempted by chocolate cake along the way (anyway, we so all deserve a no-guilt treat once in a while, right?).

  • MY NEW ROOTS. Sarah is a holistic nutritionist sharing her favorite recipes that fall in line with her plant-based diet, accompanied by beautiful photography.

  • THE FOOD GAYS. Vancouver-based, Jeremy and Adrian create some lovely colorful dishes and, though not exclusively “healthy”, they definitely incorporate wholesome ingredients into the majority of their recipes.

  • DELICIOUSLY ELLA. Struggling with Postural Tachycardia Syndrome, Ella (who really needs no intro) experimented with food to help control her symptoms and has been on a mission to make vegetables cool ever since.

  • SPROUTED KITCHEN. Sarah is a wellness enthusiast and gets excited about food that comes in its purest form. Lots of wholesome family recipes to be found here.

  • SKINNY TASTE. Gina develops her recipes with a philosophy of eating seasonal, whole foods and maintaining good portion control (everything in moderation!).

  • ADVENTURES IN COOKING. Eva is an Oregon-based cook with a love of seasonal cooking and homegrown food and her photography is stunning too.

  • COOK REPUBLIC. Born and raised in India, Sneh now lives in the Sydney bushland and believes in cooking and sharing food that nourishes.

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COOKBOOKS

  • OTTOLENGHI SIMPLE. This is the latest release from world famous chef Ottolenghi, with 130 dishes that use his signature Middle Eastern–inspired flavors in a simple way. Most are healthy and there’s a big focus on vegetables.

  • GOOD GOOD FOOD. Sarah Raven’s 250 recipes “make you feel well, look well and live longer by using the most beneficial ingredients and without ever compromising on sheer deliciousness.”

  • DELICIOUSLY ELLA. There are many books from healthy eating guru Ella Woodward to try, but a good one to start with is “100+ Easy, Healthy, and Delicious Plant-Based, Gluten-Free Recipes.”

  • GO WITH YOUR GUT. This one is targeted specifically at people who have a sensitive gut, but nutritionist Robyn Youkilis has shared a great selection of 75 simple and healthy recipes that anyone would love.

  • EAT. NOURISH. GLOW. Nutritional therapist Amanda Freer battled health problems through her 20s. These recipes were developed from the lessons that she learned about the way food affected her body and symptoms.

  • HUGH’S THREE GOOD THINGS. This is simplicity at its best with Hugh Fearnley-Whittingstall’s 3-ingredient creations. There’s a lot of healthy recipes that are wholesome and uncomplicated to choose from here.

  • IT’S ALL GOOD. Another cookbook author who consistently focuses on nutritious ingredients, in particular those that will give us more energy, is Gwyneth Paltrow. There are several books to choose from, but this is a great place to start.

  • GOOD AND SIMPLE. This collection of “recipes to eat well and thrive” comes from the ever popular culinary twins Jasmine and Melissa Hemsley who are revolutionizing the way we eat. An excellent starting point with their growing collection.

  • IN THE MOOD FOR HEALTHY FOOD. Jo Pratt’s book is fantastic for everyday, easy, delicious meals that focus on healthy ingredients, where to find them and why they are so good which means we’re also learning along the way.

  • GORDON RAMSEY’S ULTIMATE FIT FOOD. “Recipes to fuel your life” is the tagline for this Michelin-starred superchef’s cookbook that’s geared toward athletes like himself. The focus includes general wellbeing, healthy weight loss and strength and energy.

  • READY, STEADY, GLOW. A collection of healthy recipes by Madeleine Shaw, this book acknowledges that life is often a balancing act and there’s a need for simplicity to encourage us to eat in a way that is most beneficial to our minds and bodies.

  • THE DOCTOR’S KITCHEN. This is UK doctor Dr Rupy Aujla’s first book. He aims to make healthy eating a pleasure, focusing on easy, inexpensive recipes that draw on his medical knowledge as well as his experience overhauling his own heart condition through food.

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OTHER

  • MAGAZINES. From Bon Appetit to Eating Well to Saveur, it’s worth browsing magazines for healthy recipes that appeal. Pass them along to friend when you finish with them or be sure to recycle. See their websites too because many share some recipes there too. It’s worth checking the websites of international magazines even if you don’t subscribe to their paper issues; BBC Good Food, Olive and Delicious are three for the list.

  • PINTEREST. Pinterest has a wealth of recipe ideas, many of them healthy options. If you’re not familiar that the source is a trusted one, check out the comments or do a bit of research before you start cooking. Many of the bloggers we listed above have healthy eating Pinterest boards you can follow. The platform is a great search engine, so you can look for specific ingredients you have available or names of recipes you have in mind already to find a good match. Check out our new Healthy Recipes Pinterest board!

Candyce Carragher
10 Minutes With: Julia Toronczak

Meet Julia Toronczak and her twin brother Michael, the voices behind the blog (and soon-to-launch jewelry business) Beyond the Waves. Their blog shares everyday stories of their lives and aims to educate us about Down Syndrome. Below, Julia talks about her work in microbiome research, which she has had an opportunity to tie in to the Down Syndrome community, and shares a bit about life with a twin who was born with Down Syndrome and the incredible impact Michael has on her life.

 
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MTEAM: Give us a little introduction to yourself, your twin brother Michael and Beyond the Waves.
JULIA TORONCZAK:
Hello! I’m Julia Toronczak, and my twin brother, Michael, was my inspiration for our blog, Beyond the Waves. It wasn’t until we were born that my parents found out that Michael had Down Syndrome. Although he is severely impacted by it and is nonverbal, he expresses love better than anyone else I know. I recently graduated from UC San Diego in General Biology, where I also competed on the ICA swim team for four years. Michael was one of the biggest reasons why I chose to stay close to home during college, and where his love for the ocean ignited.

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MTEAM: Tell us more about Michael and his personality! What does he love most? What makes him happy? What makes him uniquely Michael?
JT:
There’s nothing that Michael loves more than the ocean. He’s always so entranced by the repetitive motion of the waves hitting the shore. It started as a coping mechanism once I was attending UC San Diego. I lived on campus because of all of our practices, and Michael would come and visit every weekend. He would always be so upset when we would first meet up, but taking him to the ocean would immediately improve his mood.

He also loves going on walks around our neighborhood, and especially loves swimming! We’re both water babies, and whenever it’s really hot it’s always great to take Michael for a swim. I’ll usually place two noodles under his back, and he’ll kick and splash around.

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MTEAM: We love following your journey together on social media. Can you tell us more about how having Michael as a twin brother has influenced your life?
JT:
I couldn’t imagine my life without Michael in it. He’s tremendously impacted my perspective, and the importance of choosing to have a positive outlook on life. We all interpret the world around us in various ways, but we also have the power to control the way we take in everything. He’s reminded me to be grateful for what’s in my life, and to release any judgements around others. I love how Michael encompasses unconditional love -- he doesn’t care about race, gender, sexual orientation, religion, etc. All he cares about is how a person treats him, which reflects how he’ll treat them back.

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MTEAM: What’s a typical day in Michael’s life like?
JT:
Michael absolutely LOVES repetition. If you try and change up his routine, that’s a no-go for him. If he knows you’re in a rush, he’ll move even slower, regardless of how important it is to be on time. He can get dressed for the most part, but we still have to assist him if he gets stuck in a shirt. Although he can brush his own teeth, it’s incredibly important that they’re cleaned thoroughly, since he had open heart surgery as a baby. I recently got an electric toothbrush, so I’ve been brushing them for him so he can get adjusted to that. In a few more weeks, once he’s accustomed to it, then we’ll start teaching him how to use that by himself.

It’s incredibly important to let individuals with Down Syndrome live their own independent lives, and to assist when it’s necessary. If you see someone else who has special needs that you don’t know and think that they’re getting too much help, release those judgements. Oftentimes the family will know what that individual is capable of more than anyone else. As anyone else with Down Syndrome, Michael is incredibly stubborn, and if you try to get him to do something that he doesn’t want to do, then he will NOT do it. With Michael, it takes a lot more time to teach him how to do something than it might for another individual who has Down Syndrome, and that’s okay. We know what is best for him, and he continues to learn how to do things for himself at his own pace.

Now he’s in a day program, so he’ll wake up in the morning and have breakfast, my mom will drive him there, and he’ll spend the day going around the community or helping out with various tasks. My mom will pick him up in the afternoon, and whenever he’s at home he’ll always sit in the same spot on the couch. That’s the biggest thing I’m working on right now, since he’s so stubborn when he’s at home and refuses to get off the couch, except when he needs to eat, go to the bathroom, or go on walks. It’s really important to keep moving around during the day, and sitting can be really dangerous to your health without moving around every so often. On weekends, I’ll usually make him breakfast, and take him on an adventure somewhere-- usually the beach :)

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MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Michael so far?
JT:
Growing up was really interesting, since Michael didn’t speak in words, and we didn’t play around with video games, or any board games like other kids did. It forced me to find other ways to interact with him, which included reading, playing outside, teaching Michael how to kick a soccer ball, etc.

I love how much Michael continues to educate me about life. Individuals who have Down Syndrome teach you incredible life lessons that you’ll learn no where else. I always say that no matter how many schools I attend, Michael will continue to teach me more about life. He continues to teach the importance of compassion, patience, love, gratitude, perspective, and so much more.

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MTEAM: In a recent newsletter, you wrote: “Even though Down Syndrome is the most commonly occurring chromosomal condition (about 1 in 700 babies) it's the least funded genetic condition in scientific research.” Tell us about the research you’re currently involved in and how it can potentially help people with Down Syndrome in the future.
JT:
Rather than “curing” Down Syndrome, I aspire to find a means of improved public health recommendations for these individuals that could stand to improve their quality of life. I’m really grateful for the opportunity I’ve been given to work in the Knight Lab in the Department of Pediatrics, in the School of Medicine at UC San Diego. It was co-founded by Drs. Rob Knight, Jack Gilbert and Jeff Leach; the project is actively run by the Knight Lab. Rob Knight’s lab is a leader in microbiome research, having held key roles in foundational projects such as the $173 million National Institutes of Health’s Human Microbiome Project. His lab develops both the software for analysis and the molecular protocols that enable microbiome research.

Little research has been done around the Down Syndrome population and the microbiome, so it would be really exciting to develop a baseline considering Down Syndrome has a lot of co-morbidity with heart defects, infections, celiac disease, and other diseases we already have microbiome information from. The American Gut Project, based out of our lab, is the world’s largest crowd-sourced microbiome research project, and the largest public human microbiome study to be published to date. We recently created a Down Syndrome cohort, which allows individuals with Down Syndrome to claim a free kit, thanks to the donations of others.

Beyond just the microbiome, Down Syndrome has a lot of research potential, and could give us some answers in cancer or alzheimer’s research as well. You can read up more information regarding this, and find out how to donate to our project here.

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MTEAM: One of your missions with Beyond the Waves is to educate. What would you tell parents who have just found out about a Down Syndrome diagnosis? What else would you most like people generally to know about Down Syndrome?
JT:
I’m not going to lie, it’s a really difficult journey. But I believe that the best paths in life tend to be the most difficult ones. They’re the ones that test our integrity and promote tremendous growth. I wouldn’t want to meet the person I’d be if I didn’t have a brother with Down Syndrome. As I said before, individuals who have Down Syndrome can teach you more about the beauty in life than anyone else.

Many individuals who have Down Syndrome can live independent lives, and are not a “hassle.” I am continuously inspired by these individuals and the light they offer to the world. That’s why it’s so important to continue raising awareness regarding Down Syndrome and special needs in general, since there’s such a negative stigma surrounding this population. The more we share our own beautiful stories, the more we can enlighten the perception of special needs.

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MTEAM: You’re about to launch a jewelry business to raise awareness about the beauty of Down Syndrome. Congrats! Tell us about the jewelry you’ll be selling and how you’re tying it all in with your goal to spread awareness of Down Syndrome.
JT:
I’ll be selling handmade jewelry made by myself that incorporates our blog, love of the ocean, or Down Syndrome. Some of the proceeds will be donated towards Down Syndrome research (still in the process of choosing an organization), to help raise awareness of how important the Down Syndrome community is in research.

Did you know that individuals who have Down Syndrome are protected from coronary artery disease, hypertension, and most solid tumors, including breast, colon, and skin cancers? Interestingly enough, scientists have discovered that individuals who have leukemia but do not have Down Syndrome end up having a part of the 21st chromosome amplified, which may carry a “leukemia oncogene.”

Just 30 years ago, the average life expectancy for an individual with Down Syndrome was around 25 years. Now, thanks to advances in research, that number has jumped up to about 60 years.

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MTEAM: What advice would you offer to anyone who has an opportunity to meet someone with Down Syndrome for the first time?
JT:
Just go ahead and introduce yourself! These individuals love getting to meet others, and interacting just like any one of us would. I always encourage others to go up and introduce yourself, and offer a handshake or a high five, even if the other individual can’t speak. I always love it when people introduce themselves to Michael, and you can tell that he loves it too :)

One of my previous posts gives additional advice regarding how to approach someone who has special needs, if you would like to find out more.

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MTEAM: If there was one thing you’d most like the world to know about Michael that you haven’t said here already, what would it be?
JT:
Michael is just like you or me. He feels the same emotions that any of us do, and can have great days and off days too. Because he’s nonverbal, he just needs to find other ways to express himself. I am continuously inspired by how blindly he loves others, which I believe is really important for our society today.

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Want to connect with Julia and Michael? Here’s where you can find them:

Beyond the Waves Blog
Instagram
Facebook
Twitter
Shop
Research Info
DS research cohort donations

Candyce Carragher
A Best Buddies Story: Joshua Felder

Meet Josh Felder, an enthusiastic Advanced Ambassador for Best Buddies. Follow Josh on social media and you'll no doubt hear him say: “We’re in it to win it with inclusion.”

 
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We caught up with Josh to find out what this motto means to him personally, what memorable activities he's been able to get involved with through his position with Best Buddies and how he sees his career developing in the future. 

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MTEAM: Tell us a little bit about yourself!
JOSHUA FELDER: 
My name is Joshua Felder and I am an Advanced Ambassador for Best Buddies of Tamp, FL. I enjoy sports and public speaking. I am a natural athlete (I was a member of the high school track team and swim team) and an excellent hip-hop dancer. I also danced on stage with the Back-Pack Kid, at our recent Friendship Walk.

Joshua Felder Interview - Best Buddies Ambassador

MTEAM: When and how did you become an ambassador for Best Buddies?
JF: 
During my senior year in high school, I informed the high school Best Buddies Faculty Advisor that I wanted to become an Ambassador. The Faculty Advisor signed me up online and I later began attending Ambassador trainings to enhance my public speaking and leadership skills. 

Joshua Felder Interview - Best Buddies Ambassador

MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
JF: 
Some of the coolest things I’ve done are co-hosting the Best Buddies Friendship Walk, promoting Best Buddies on local radio stations, and giving speeches at Best Buddies events.

Joshua Felder Interview - Best Buddies Ambassador.jpg

MTEAM: What do you love most about the Best Buddies? How have they helped to support you?
JF: 
What I love most about Best Buddies is the fact that they provide opportunities for lasting friendships and leadership development. I now have lots of friends and numerous opportunities to speak at Best Buddies events.

Joshua Felder Interview - Best Buddies Ambassador.JPG

MTEAM: How do you see Best Buddies playing a role in your future? Do you have a career path you’d love to follow in mind? 
JF: 
I’m hopeful that in the near future, I will have a paid position with Best Buddies. I’d like to have a public speaking career with Best Buddies.

Joshua Felder Interview - Best Buddies Ambassador.JPEG

MTEAM: How would you explain Best Buddies to someone who has never heard of the organization before?
JF: 
Best Buddies is a worldwide organization that helps individuals with intellectual and developmental disabilities find one-to-one friendships, employment, and develop leadership skills. This nonprofit organization was founded in Georgetown in 1989, by Anthony K. Shriver.

Joshua Felder Interview - Best Buddies Ambassador.JPG

MTEAM: Have you met anyone through Best Buddies who really inspires you? Who and how so?
JF: 
Tampa, FL Global Ambassador, Kellie Howard, is a great inspiration for me. She gives me advice on leadership skills, encourages and supports me at Best Buddies events, and we have developed a lasting friendship.

Joshua Felder Interview - Best Buddies Ambassador.jpg

MTEAM: You always say, “We’re in it to win it inclusion.” What does this mean to you personally?
JF: 
It means that persons with intellectual and developmental disabilities (IDD) should be treated equally and included. We deserve the right to be heard, we deserve the right to have jobs, we deserve the right to contribute to our community and become leaders in our community.

Joshua Felder Interview - Best Buddies Ambassador.jpg

MTEAM: Do you have a favorite memory from your time with Best Buddies?
JF: 
My favorite memory is from April 2018 when I co-hosted the Friendship Walk and danced on stage with the Back-Pack Kid.

Joshua Felder Interview - Best Buddies Ambassador.jpg

MTEAM: What would you say to someone who was considering about supporting Best Buddies or joining a Best Buddies Challenge community like the MTeam, but not sure whether to go ahead?
JF: 
Please join me and the whole world to support Best Buddies so that people with IDD. can be moved to a new acceptance in their families and community. Your contribution and team efforts will make a positive impact in the lives of people with IDD. 

Candyce Carragher
Meet the MTeam: Xavier Sykes
 
Meet the MTeam - Xavier Sykes.png
 

Meet Xavier, one of the MTeam’s top fundraisers for Best Buddies International last year. He came all the way from Maryland to Massachusetts to participate in the Hyannis Port Best Buddies Challenge with us and cycled an impressive 50 miles. Amazingly, Xavier’s been involved with Best Buddies since middle school when he was vice president and then president of his chapter. Below, he talks about how this experience stuck with him, shares some of his top fundraising tips and tells us what makes the MTeam special.

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MTEAM: When and why did you decide to join the MTeam? 
XAVIER SYKES:
I Joined the MTeam on February 2nd, 2018. I joined for a couple of reasons. First, I was going out of state to attend the Best Buddies Challenge Hyannis Port and I wanted to feel like I was a part of a team. Secondly, I loved seeing the team camaraderie at other Best Buddies Challenges. I was originally part of Team Audi when the Best Buddies Challenge was in Washington, D.C. Lastly, I looked into the many different teams and the MTeam stuck out to me. I loved the motto #MilesForSmiles.

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MTEAM: Why is the MTeam and the Best Buddies mission important to you?
XS:
The MTeam and Best Buddies’ mission is important to me because it involves and discusses inclusion for people who may not be your average everyday people. Personally, I have been involved with Best Buddies since my years in middle school (Vice President, President). Since then, I have gained a better knowledge of people with intellectual and developmental disabilities. With this knowledge, I am able to educate a broader audience about Best Buddies’ and the MTeam’s mission.

Meet the MTeam - Xavier Sykes

MTEAM: What’s one thing you’ve learned from being part of the MTeam community? 
XS:
One thing I learned from being a part of the MTeam is that we are all family. I came from Maryland to do the challenge and from the moment I met John, Greg, Laura, Meredith, and Candyce, they all made me feel like family and always helped me with the things I needed to be successful.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: What makes the MTeam special? What would inspire people to join you?
XS:
One of the main things that makes the MTeam stand out is all of the special amenities that we get to have like water bottles, t-shirts, cycling bibs/shorts, social media shout outs, etc. The MTeam sets a high standard in making sure their participants feel like they have the best team around. People would be inspired to join me when they see the pictures and donation follow ups that are posted daily.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: Did you walk, run or ride in the 2018 Best Buddies Challenge? Describe the atmosphere of the event for us! What will you do 2019?
XS:
I originally was scheduled to do 100 miles, but ended up doing 50 miles due to becoming sick along the ride. The atmosphere was beyond amazing. The beach scenery at the start of the ride was beautiful. The after party, dinner, and concert was beyond my imagination. Overall, this event was worth the flight down from Maryland. I look forward to doing the 50 miler again in 2019, with the hopes of changing my mind and doing the 100 miler.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: Tell us about your training regime and how you prepare yourself for the physical challenge.
XS:
Due to the short time span from registering to the actual ride date, I was unable to get full proper training in last year. What I did do though was cut off sodas from March to June. I saw a dramatic weight change. I also tried my best to get into the gym and do some indoor cycling. Looking forward, I intend on doing the same again.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
XS:
Mentally, I think about all of the people that watch what I do and are motivated by me. I also think of the times where I had a buddy during my middle school program; he would not want me to give up. Finally, I think of all the people with intellectual and developmental disabilities all around the world who would want to see me do well.

Meet the MTeam - Xavier Sykes.jpg

MTEAM: How did you feel when you crossed the finish line last year?
XS:
I felt exhausted and relieved. I also felt a sense of pride in that I did not give up. I loved seeing all of my MTeam family there at the finish line supporting me. Best feeling ever!

Meet the MTeam - Xavier Sykes.png

MTEAM: You were one of the MTeam’s top 10 fundraisers in 2018, raising over $2,000 for Best Buddies. Amazing work! Do you have any tips for new fundraisers joining us in 2019?
XS:

1. Use Social Media and hashtags (#MTeam, #MilesForSmiles, etc), post daily updates on how your fundraising is going, etc.
2. Partner with local coffee shops and see if you can place a fundraising tub in their establishment. 
3. Attend any parades and set up a table.
4. Ask coworkers for donations. 
5. Email, email, email!!! Follow up too!
6. Texting (we do it every day anyway).

Meet the MTeam - Xavier Sykes.png

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
XS:
Meeting Meredith was a powerful moment for me. To see how happy she was and the energy around her was amazing. Also, the photo op with the whole team was pretty epic! 

Find Xavier on Instagram: @akidnamedzay

Candyce Carragher
October: Celebrating National Disability Employment Awareness Month

Hello October. A month of crispy golden leaves scattered across sidewalks, gourds and ghouls decorating porches and horror films creeping through our Netflix recommendations. 

 
October is National Disability Employment Awareness Month
 

It’s also a very important time because it’s a month that the government has set aside to do something we should be doing all year round: celebrating a workforce that’s rich with people of all abilities and raising awareness of how important it is to ensure that all people with disabilities have opportunities for integrated employment.

This year’s National Disability Employment Awareness Month theme is “America’s Workforce: Empowering All”. Best Buddies — the organization that the MTeam supports through fundraising efforts and participation in the Best Buddies Challenge each year — shines in this area for people with intellectual and developmental disabilities.

Best Buddies Jobs

Did you know that 81% of adults with developmental disabilities do not have a paid job in the community? The Best Buddies Jobs program is growing, with over 1,000 capable, talented and driven Best Buddies participants in jobs that match their skills, talents and interests. They’re paying taxes, spending an average of 22 hours per week on the job and earning an income at an average of $12.28 per hour, which tops the minimum wage in many US cities.

Best Buddies’ examples (like the story of Michael Dykman & Genentech) show that employers who hire individuals with IDD benefit just as much as our participants. "Smart employers know that including different perspectives in problem-solving situations leads to better solutions,” U.S. Secretary of Labor Alexander Acosta said. “Hiring employees with diverse abilities strengthens their business, increases competition and drives innovation."

  Photo:  Best Buddies Jobs participant Harry with CAPA The Global Education Network CEO and MTeam Captain John Christian at the CAPA offices.

Photo: Best Buddies Jobs participant Harry with CAPA The Global Education Network CEO and MTeam Captain John Christian at the CAPA offices.

The MTeam’s biggest sponsor, CAPA The Global Education Network, is one of many employers benefitting from the Best Buddies Jobs program and we endorse it fully.

“Diversity and inclusion has always been an important personal value,” said CAPA The Global Education Network CEO and MTeam Captain John Christian. “No matter how a student identifies, CAPA’s mission is to give as many students as possible the opportunity to study abroad because we know that affects the world positively. Best Buddies does something very similar. They give people with IDD employment opportunities. They spread awareness so that everyone has a seat at the table. The more we are around people who are different than us, the more accustomed we become, the less afraid we are, the more connections we can make. This is how we make the world a better place.”

  Photo:  Best Buddies offer leadership development opportunities for people like  Jack Mayor , a fantastic public speaker who now travels around sharing his story.

Photo: Best Buddies offer leadership development opportunities for people like Jack Mayor, a fantastic public speaker who now travels around sharing his story.

There’s a great read from Meriah Nichols called “Why Hire Someone With A Disability” written from her perspective as a a career counselor and member of the disability community. She talks about everything from the number of people with a disability who have a strong resume to the “out-of-the-box” thinking mentality that many people who were born with disabilities have cultivated over the years to the richness that diversity brings to the workplace.

And while there’s progress and there’s much to celebrate, there’s still a lot of work to be done in this area, to open up opportunities that will benefit both the disability community and the employers who are open-minded and intelligent enough to welcome them on board.

Will you join us?

Candyce Carragher
10 Minutes With: The Able Fables

Meet Dr. Nicole Kmieciak, whose project and movement called The Able Fables advocates for inclusion, celebrates ability over disability and gives parents tools to talk about the beauty of diversity with young children. The Able Fables is a series of children's picture books, written by Nicole, the first to be released in November this year.

 
10 Minutes with The Able Fables.png
 

Below, she tells the story about what inspired her to start The Able Fables, shares some insight into the books that she's already written and talks about the overarching messages she hopes her work will help instil in children at an early age so they will grow up and be able to impact the world to make it a more inclusive place in every aspect of life.   

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: Tell us a bit about yourself.
DR. NICOLE KMIECIAK: My name is Nicole. I am originally from Illinois, but live in Nashville, TN. I received my doctorate in occupational therapy, and work in behavior/mental health. I have a big, beautiful family, and enjoy spending time with them whenever I can. Otherwise, you can find me exploring new cities on the weekend, camera in hand, in search of tacos! I also love fishing with my dad, thrift shopping, and being out on the water.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: You started a movement that you’ve called the Able Fables with the tagline “We’re all able”. What do you hope to accomplish?
DR. NK: 
Ha, tough question! I am a bit of a ‘gigantic dreamer’ thus the name of our first book, Gary’s Gigantic Dream. I’ll do my best to summarize what I hope to accomplish with our inclusive movement & children’s picture book series! I hope to:

1. Increase children's sense of self worth, understanding their value in this world. 
2. Decrease stigma of mental, psychosocial, and physical disabilities, reducing bullying. 
3. Allowing children of all abilities to see themselves as main characters in the earliest form of media. 
4. Facilitate conversation about inclusion between parents and their children. 
5. Cultivate friendships that value and flourish off differences.
6. Create a more inclusive community.
7. One day build a universally designed playground!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: When did you start Able Fables and why?
DR. NK: 
I started writing for The Able Fables when I was in my last year of my OTD (Occupational Therapy Doctorate) program. That would have been 2016-2017. The first book came to me while I was studying in my favorite coffee shop, Eighth & Roast. And when I say it came to me, it was literally as if God wrote it. I had no plan, not even a background in writing. It effortlessly flowed from my pen to paper in 30 minutes. That is why I like to think of The Able Fables as “a God thing.” However, when I became determined to make The Able Fables an inclusive movement & book series, my motivation was crystal clear: LACK OF ACCESS AND USABILITY! 

One day I took a power wheelchair to a local coffee shop with a classmate for our assistive technology class. Our case studies were ALS and Duchenne's Muscular Dystrophy. We were to use the chair within the space & measure accessibility. Here’s what happened: The parking space was incorrect, no room for the ramp. The sidewalk was too narrow. A wheelchair would not be able to turn to enter the front door, and even if the sidewalk was correct, the door was too narrow, and the threshold was too high. We could not even get in.

I cried. To me us not being able to enter was the same as saying “you are not welcome here.” I am not a wheelchair user. I do not know how it feels to be turned away from a business because it is not useable. I am able to park, enter, eat, access the bar, use the bathroom, but a lot of people cannot, and that is NOT OKAY. 

I spent months studying and completing research on universal design in the community (parks, restaurants, hotels, etc). A change needs to be made, and I have the power to do something about it! So, I am writing children’s books, because moms read books and so do dads. Brothers read books, and so do sisters, and babysitters, and teachers, and grandparents, and aunts & uncles. What a great way to educate people of all ages!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: Tell us the story behind the name The Able Fables!
DR. NK:
 I had already written the first book (which is actually the second in the series). When I wrote the first book, it was just going to be a stand alone book. I had no intention of a series, but, one morning I was making coffee, thinking about what baby names I liked, no joke. One of the names I liked was Mabel, and I thought to myself, (I have no idea why) “What rhymes with Mabel?” I guess I wanted to see if there was another similar name I liked better. So I started with A: Able, Bable, Cable, Dable, Eable (not a word), Fable.. Immediately, I went to my journal and wrote down The Able Fables, and thanked God baby names were on my mind that morning. Now I knew I had to write a series called The Able Fables!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: You don’t have books for sale quite yet, but you will soon! Can you tell us about the ones you’ve written already? How many?
DR. NK:
 I have five books completed for the series, multiple more in progress! I am waiting to finish the others until I get a few out. What is the series about? I’ll fill you in! Gary, our main character & storyteller gets fitted for a manual wheelchair. After receiving his new chair he is thrilled with his newfound independence; he can now access his environment in a whole new way! He is able! And he is inspired to tell stories of other children & their abilities. He narrates the books that follow. I don’t want to give too much away, but I will say another character uses a power wheelchair, one has a limb difference, & another has anxiety and low self esteem.

I also have 3 others books written that have the same themes of inclusion and diversity, but are not part of The Able Fables series!

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: How do The Able Fables stand out from other children’s picture books?
DR. NK:
We stand out in a few ways! 

  1. Our main character has a disability and several of the characters in the following books also have disabilities. They may be hidden or visible. This population is underrepresented in all forms of media and advertising.

  2. Our focus is on ABILITY, not disability. This means you won’t find our books saying, “This is Jenny, Jenny has Spina Bifida, you should be nice to Jenny.” Each character has his/her own ability story, with little mention of the disability itself, because we are strength-based and believe we’re all able!

  3. At the end of each book, we will be featuring real kiddos that share a similarity with the main character. Maybe they used the same type of adaptive equipment, maybe they have the same diagnosis, maybe they play the same sport or have the same interests!

  4. Each book will provide parents with discussion prompts if they with to talk with their child about inclusion & celebrating differences.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: When will the books be released? How are you fundraising to print them? What has the process been like so far?
DR. NK:
 Our first book is on track for the end of November 2018, fingers crossed. As for the following books, that is all to be determined by God’s timing! We’ll see what happens! I have been fundraising by selling t-shirts through Bonfire.com, and have raised $4,000 in six months. We have plenty of designs available; if you would like to check them out you can visit us on Facebook or Instagram. The link to all of our shirts is in our bio! You can also go to Bonfire.com & search The Able Fables.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: You said you’d like a portion of your profits to be donated to an Able Fables playground/playgrounds. Why playgrounds?
DR. NK: 
Yes! Once our first book is out, we will be able to determine the exact percentage. I have a dream to open a universally designed park! I have a theory that lack of education and exposure causes not only a lack of knowledge, but discomfort. I believe that if all kinds of children grow up around all kinds of children, those children will grow up aware and comfortable. Those children will grow up with friends who are of different races, socioeconomic statuses, and abilities. Then when those children become teachers they will teach for all children. When those children become architects they will design for all people. When those children become business owners their spaces will be useful by all people. I believe universally designed parks, playgrounds, museums, and spaces will expose children and parents, increasing their knowledge and comfort level, empowering them to change the world.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: On your website, you offer a monthly download called “Color Me Inclusion”. Tell us what this is all about? Can anyone submit artwork?
DR. NK: 
I do! Color Me Inclusion™ is another way to expose children and parents to inclusion at an early age! The themes for our coloring pages are inclusion, ability, and friendship. Anyone, any age, any ability can donate a coloring page. If you are interested, contact us through our website at www.theablefables.com.

The Able Fables Interview with Dr. Nicole Kmieciak

MTEAM: Do you think we can change the way the world sees disability?
DR. NK:
 I wholeheartedly believe we, as a community, can change the way we view disability! It’s already happening. Target and Tommy Hilfiger offer clothing for all abilities! Also, check out some of my favorite organizations: Changing The Face of Beauty and The Lucky Fin Project. You can watch the video below to get a glimpse into how we can flip our perspective when it comes to the word ‘disability’.

MTEAM: Share a few of the simpler ways that the world could be changed by individuals or small groups of people to become a more inclusive place.
DR. NK: 
12 things you can do to be more inclusive:

  1. If you see a person with a disability, instead of staring, say hello, how are you today? Spark a conversation.

  2. Expose young children to diversity through picture books.

  3. Talk to your children about the strength and beauty of diversity at an early age.

  4. Support non-profits working toward social change.

  5. Volunteer somewhere out of your comfort zone.

  6. Perform random acts of kindness.

  7. Educate yourself on person first language (i.e. Someone experiencing homelessness, a child with autism, a boy with Down syndrome).

  8. If you’ve created a product, seek feedback from multiple users.

  9. If you own a business, form a user focus group to assess accessibility and usability of your space.

  10. Empower others from underrepresented groups.

  11. Choose love over judgment.

  12. Practice empathy.

The Able Fables Interview with Dr. Nicole Kmieciak

Candyce Carragher
A Best Buddies Story: Jack Mayor
 
A Best Buddies Story - Jack Mayor.png
 

Meet Jack Mayor, an enthusiastic Best Buddies Ambassador, who - thanks to training and opportunities that he's found through Best Buddies - is now a very captivating public speaker. Jack travels all over the United States sharing his story about living with Autism, talking about how Josie - who was the President of Jack's high school chapter of Best Buddies - formed a friendship that helped to change his life, and emphasizing the importance of the work that this organization does for kids around the world. 

A Best Buddies Story - Jack Mayor

In the words of Jack from the Best Buddies Nashville Gala 2018: "Best Buddies took my worst days and made them my best." 

Below, Jack shares a bit more of his story with us, including what he loves most about Best Buddies, what it's like being on the Best Buddies Board of Directors and one things he would like the world to know about people who have Autism. 

A Best Buddies Story - Jack Mayor

MTEAM: Tell us a little bit about yourself!
JACK MAYOR:
 My Name is Jack Mayor. I am 18-years-old. I am from Naperville, Illinois. I like to go on the computer and go on Google Maps. I love to drink coffee. One of my favorite sports to do is swimming.

A Best Buddies Story - Jack Mayor

MTEAM: When and how did you become an ambassador for Best Buddies?
JM:
 I was formally asked after giving a speech during my Sophomore year at my high school to become an ambassador for Best Buddies. I officially became a Best Buddies Ambassador after going through training in November 2016. 

A Best Buddies Story - Jack Mayor

MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
JM:
 I think one of the coolest things that I get to do as an Ambassador for Best Buddies is speak around the country and meet new people. I have made really good friends through Best Buddies. 

A Best Buddies Story - Jack Mayor

MTEAM: What do you love most about the Best Buddies? How have they helped to support you? 
JM:
 I mostly love Best Buddies because everyone in this organization treats each other, including myself, like family. Best Buddies has supported me by encouraging me to pursue my speaking career. 

A Best Buddies Story - Jack Mayor

MTEAM: What made you decide to pursue a career in public speaking? How have your skills progressed over the years and what role has Best Buddies played in this?
JM: 
At my first Leadership Conference, Best Buddies taught me to be a public speaker. The skills that I left there with have been life-changing for me. Best Buddies continues to provide training throughout the year to help me advance my speaking skills. 

A Best Buddies Story - Jack Mayor

MTEAM: You were recently chosen to join the Best Buddies Board of Directors. Tell us a bit about what this involves. 
JM: 
I have the opportunity to see how the company works at all levels from the Friendship program to the Jobs program. I am excited that my opinions about this organization will not only be heard, but hopefully can help further our mission and goals.

A Best Buddies Story - Jack Mayor

MTEAM: Have you met anyone through Best Buddies who really inspires you? Who and how so? 
JM: 
The person that I have met and formed a friendship with is Matt Sousa. He is the State Director for PA. We bonded immediately, he gets me, and I love that he jokes with me and makes me laugh. 

A Best Buddies Story - Jack Mayor

MTEAM: One of your goals is to educate the public about what it’s like to grow up and live with autism. For people who have never encountered anyone who has autism before, what would you most like them to know?
JM:
 I would like them to know that they need to have patience. Autism is really hard on me, and I oftentimes get overwhelmed and easily frustrated. Having someone who is patient with me, and all of my quirks, helps me out a lot. 

A Best Buddies Story - Jack Mayor

MTEAM: Do you have a favorite memory from your time with Best Buddies?
JM:
My favorite memory in my time with Best Buddies was the 2017 Miami Gala, because it was such a great honor to be able to speak in the headquarters of this outstanding organization. 

A Best Buddies Story - Jack Mayor

MTEAM: What would you say to someone who was considering about supporting Best Buddies or joining a Best Buddies Challenge community like the MTeam, but not sure whether to go ahead?
JM: 
I would tell someone who is interested in supporting Best Buddies that if you care about making positive changes in special people’s lives, then Best Buddies is an organization that you should get involved with. I would also tell them that Best Buddies has a proven track record of taking their resources and making better lives for so many others. 

Candyce Carragher
Meet the MTeam: David Parada

Meet MTeamer David Parada who completed his first 100 mile cycle in the Best Buddies Challenge with the MTeam in 2018. He signed up the same day for next year!

 
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In our interview below, he also tells us the reason why supporting people with intellectual and developmental opportunities is important to him, talks about how he pushed himself to the finish line of the longest race he's ever cycled, and shares one of his favorite memories as an MTeamer.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: When and why did you decide to join the MTeam?
DAVID PARADA: 
I actually joined the MTeam by chance. I was doing a training ride for the Best Buddies Challenge last year when I was introduced to John (MTeam’s captain). We got to talking and he asked me if I was part of a team. I explained it was my first time doing the Best Buddies Challenge, so I really didn't know anyone. He told me had one slot left open on the MTeam and asked if I wanted to join. He explained who Mer Bear was and that this team is for her and for awareness of FOXG1. I couldn’t be more happy that I agreed to become a part of this community.

David Parada - Meet the MTeam Interview

MTEAM: Why is the MTeam and the Best Buddies mission important to you?
DP:
 People with IDD are very close to my heart as I worked as a behavioral specialist for seven years, working closely with children and adults with special needs. The people I worked with became family and brought light into my life. The MTeam and Best Buddies mission aligns with my ideals and I do the ride for those ones that I love. I love how welcoming the team is and the friendships and connections I’ve made in just this short time.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: What’s one thing you’ve learned from being part of the MTeam community?
DP:
 Prior to joining the MTeam, I was not aware of the rare condition FOXG1. Through this amazing community of the MTeam, I’ve learned so much about the syndrome and what a supportive community there is for people just like Mer Bear.

David Parada - Meet the MTeam Interview

MTEAM: What makes the MTeam special? What would inspire people to join you?
DP:
 I can’t say much about other teams as this is kind of the first fundraising team I’ve ever joined, but MTeam’s genuine dedication to help this cause, their love and support for one another and for Mer, and the welcoming attitude they have towards anyone interested in the team and Best Buddies Challenge is something very special and does not go unnoticed.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: Did you walk, run or ride in the 2018 Best Buddies Challenge? What about 2019? Describe the atmosphere of the event for us!
DP:
 I completed the 100 mile cycling challenge and I signed up that same day to do it again in 2019. Honestly, it was very nerve-wracking as it was a challenge that I never thought was possible for me. I’ll never forget the feeling at the starting line that I was just about to embark on a six and a half hour bike ride when the longest I’ve ever done before was two hours. But the support I had along the way and the smiles on the Best Buddies' faces at the finish line made it all worth it!!

David Parada - Meet the MTeam Interview

MTEAM: Tell us about your training regime and how you prepare yourself for the physical challenge.
DP: 
Due to an ankle injury last year, I didn’t really have a strict training regime for this challenge. I cannot emphasize enough that it was mind over matter for me. I remember at one point, around mile 82, I just shut off my brain and turned into a machine to keep my legs going.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
DP: 
I kept thinking of the individuals in my life that may have not been able to complete this challenge due to physical or mental limitations and kept reminding myself that I am doing this for them. I did it for anyone and everyone that’s ever wanted to be able to do this type of challenge.

David Parada - Meet the MTeam Interview

MTEAM: How did you feel when you crossed the finish line last year?
DP:
 The last two miles by far were the hardest miles I have ever ridden. I didn’t think I was even going to make it to the finish line. But, turning that corner and seeing all the faces of friends and families cheering and supporting everyone was overwhelming. I was elated. The hug I received from the buddy who gave me the finisher’s medal was a moment I’ll never forget.

David Parada - Meet the MTeam Interview
David Parada - Meet the MTeam Interview

MTEAM: What’s your best piece of advice for MTeam newbies and one piece of advice for returning MTeamers?
DP:
 For new teammates, welcome to the family! We are here if you need anything. Just know we are with you every step of the way. For returning MTeamers, thank you for paving the way for this amazing growing team and for continuing to utilize the team as a means for outreach. All I can say is thank you, I admire you all, and I feel privileged to be a part of this team.

David Parada - Meet the MTeam Interview

MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
DP: 
Our captain John let us know we had surpassed our original goal of $150,000 raised right before the start of the 100 mile ride. This was a giant morale boost and I knew right away that I had made the right decision to join this amazing team. I can’t wait for the future memories that we will be creating in 2019 and many years to come.

David Parada - Meet the MTeam Interview
Candyce Carragher
10 TED Talks on Health, Fitness & Wellness

Whether it harks back to the return to school season from our childhoods or it’s the refreshing release from the summer heat, September is a time that many of us take stock of our lives, look for ways to make changes and find fresh inspiration to do so. 

 
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TED Talks can be amazing motivators, so we’ve rounded up 10 of them that focus on health, fitness and wellness. Dive in:  

1. SHIMON SCHOCKEN: WHAT A BIKE RIDE CAN TEACH YOU. 

A computer science professor and avid mountain biker, Shimon Schocken spoke at TEDxTelAviv about the outdoor program he created to cycle with some of Israel’s juvenile inmates to share the life lessons he learned while riding. Great talk on how physical activity, nature and a challenge can affect our lives. 

2. JACQUELINE WAY: HOW TO BE HAPPY EVERY DAY - IT WILL CHANGE THE WORLD.

Founder of 365Give, a charity dedicated to educating, empowering, and inspiring children to change the world "one give, one day at a time,” Jacqueline Way promotes an idea at TEDxStanleyPark that we can all use to boost our happiness. It’s as simple as giving to others, she says - a theory that she tested by giving something away every day for a year. Research backs this up, showing that giving reduces stress and, indeed, makes us happy. 

3. EMILY BALCETIS: WHY SOME PEOPLE FIND EXERCISE HARDER THAN OTHERS.

Why is working out a chore for some people while others thrive on it? Social psychologist Emily Balcetis shares some research at TEDxNewYork that addresses this. She shows how our vision makes a difference and how to work with this knowledge to become someone who enjoys physical activity.

4. RUAIRI ROBERTS: FOOD FOR THOUGHT - HOW YOUR BELLY CONTROLS YOUR BRAIN.

At TEDxFulbrightSantaMonica, nutritionist, microbiologist and neuroscientist, Ruairi Robertson looks at the connection between our stomachs and brains and how what we eat can influence both our physical and mental health. He refers to our bellies as our “second brain” and discusses the ways in which we can use nutrition to fight and prevent disease. 

5. DAN BUETTNER: HOW TO LIVE TO BE 100+.

New York Times bestseller and National Geographic Fellow Dan Buettner debunks common myths about longevity at TEDxTC. He studied the world’s “Blue Zones” where “communities live with vim and vigor to record-setting age.” He shares nine diet and lifestyle habits that will push us to live our best and longest lives.

6. MATT CUTTS: TRY SOMETHING NEW FOR 30 DAYS.

Have something in mind that you’d like to do but keep putting off for one reason or another? At TED2011, Matt Cutts challenged his audience to set a goal and try that thing for just 30 days. It seems to be the right amount of time or create (bike to work?) or get rid of (stop eating sugar?) a habit. 

7. CHRISTOPHER MCDOUGALL: ARE WE BORN TO RUN? 

Why do people have a desire to run? At TEDxPennQuarter, Christopher McDougall explores the ties to our history (human survival) and shares the story of a marathon runner with a “heart of gold” and a tribe in Mexico that runs to live. Research has shown that running is a way to get all parts of the body working harmoniously to promote health.

8. DAN GILBERT: THE SURPRISING SCIENCE OF HAPPINESS. 

What makes us happy? It’s not always what we think it will be, says Harvard psychologist Dan Gilbert at TED2004. He talks about what will actually make us happier, supported by research, while promoting his book Stumbling on Happiness. We have what he calls a “psychological immune system”, a concept he explores on the stage. 

9. SCOTT GELLER: THE PSYCHOLOGY OF SELF MOTIVATION.

Alumni Distinguished Professor at Virginia Tech and Director of the Center for Applied Behavior Systems in the Department of Psychology, Scott Geller took to the stage at TEDxVirginiaTech to talk about how we can become self-motivated. He asks three questions that, if answered, can lead us to feel empowered to reach our goals. 

10. AMY MORIN: THE SECRET OF BECOMING MENTALLY STRONG. 

How do we build the mental strength needed for marathons, triathlons and cycling races? Licensed clinical psychologist Amy Morin spoke on the 3 basic factors of mental strength - regulating our thoughts, managing our emotions, and behaving productively despite our circumstances - at TEDxOcala. 

Candyce Carragher
10 Minutes with: Amanda Schuster (@TheYamQueen)

Meet Amanda Schuster. We've been following her sweet baby girl Emmy on Instagram for a while now. We just love her updates and seeing the way brave little Emmy is growing and changing over time.

 
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Below, Amanda shares some stories of her life with Emmy who was born with a very rare genetic condition called Pfeiffer Syndrome, and the rest of her family including her husband and Emmy's big bro Baron who she absolutely adores, She also tells us how Pfeiffer Syndrome manifests itself and what we can do to make the world a more inclusive place for Emmy.

Amanda and Emmy - Pfeiffer Syndrome Awareness

 MTEAM: Tell us a bit about yourself and your family.
AMANDA SCHUSTER: 
I’m Amanda. We currently live in the Seattle area, but both my husband and I grew up in Kentucky. We have two cool kids, a hairless dog, and a hairless cat. We both work full time. My job is pretty boring phone work for a doctor’s office (sorry, doc!) but I get to do it from home. My husband is a game designer with Wizards of the Coast.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Your daughter Emmy was born with Pfeiffer Syndrome. How common is it? Can you explain a bit about what it is exactly and how it manifests itself?
AS: 
Pfeiffer Syndrome is very rare. It’s about a 1 in 100,000 birth syndrome. Emmy has a special twist of Pfeiffer Syndrome that is about 1 in 250,000 births. 

Pfeiffer Syndrome is a mutation on the FGFR2 gene which doesn’t mean much to me. It’s not hereditary unless you have Pfeiffer Syndrome and then it’s a 50/50 chance that you will pass it on. Neither of us have Pfeiffer Syndrome, so it was just a spontaneous genetic mutation and nothing we did or didn’t do made it happen.

The basics of Pfeiffer Syndrome is that the skull begins to fuse early on in development. Babies have “soft spots” where the skull hasn’t fused together so the skull can expand and the brain can grow. Emmy’s skull fused before birth. That causes pressure on the brain and the shape causes her eyes to look bulging. It also can cause hearing loss. Her midface is squished which causes breathing and eating trouble, so she has a tracheostomy and a feeding tube until a surgery will (hopefully) change that. There are other things that Pfeiffer brings - wide thumbs and toes, tracheal sleeve, fused joints - all of which Emmy has.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Tell us a bit more about Emmy! How old is she? What does she love most? What makes her happy? What makes her uniquely Emmy??
AS: 
Emmy just turned a year old! She’s been through a lot in her first year to get her medically stable and now she gets to do some developing. She’s a little delayed but is learning and growing and we don’t have any reason to believe that she won’t catch up developmentally.

She loves her brother most of all. She thinks he’s just the greatest. She loves kisses, tickles, and her Oball. She has really learned to love wearing her BAHA hearing aid and making loud kiss noises while giving her kisses on her head make her laugh so much!

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What’s a typical day in Emmy’s life like?
AS: 
Honestly, pretty boring considering all that she’s got going on. It’s pretty typical things just done in non-typical ways. She’s fed by feeding tube at normal meal times. While I work, she hangs out with her amazing nurses downstairs and they play together and she fights naps, just like a typical kid. She does have to have her trach area cleaned every night, which is fairly unusual for most kids and she hates it because it means less play time.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Emmy has a special relationship with her big brother Baron. They clearly adore each other! What does he love to do with her most? Do you have any advice for other parents on how to explain a diagnosis like Pfeiffer Syndrome to a big sibling?
AS:
 He has really risen to the task of big brother. He loves to do things to help out with her care. He really loves watching Yo Gabba Gabba with her and tickling her. 

Baron has always been a really bright, inquisitive kid. For us, we approached Emmy’s differences very directly. We explained what she would likely look like, what she may need to help her grow, and that she would likely have many surgeries in her life. We introduced him to other kids with Pfeiffer Syndrome online. When he got the opportunity to meet some kids close to his age with Pfeiffer Syndrome, I’m super proud to say that he just treated them like any other kids he wanted to play with.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Emmy so far?
AS: 
There have been a lot of challenges. It’s been difficult trying to adjust to what “normal” is for Emmy. She doesn’t meet milestones like an average baby and she has so many medical needs. The biggest challenge for me, truly, has been letting go of what “normal” means and letting Emmy lead.

The best rewards are always her smiles. Seeing her happiness after all of the medical interventions it took to get her growing and stable is so incredible.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What advice would you offer to other parents who are just finding out about a Pfeiffer syndrome diagnosis? What about some advice to the parents of other children who take notice of Emmy’s physical differences?
AS: 
The best advice I could possibly give another parent getting this diagnosis is to just let the child lead. Find a good team of doctors that will help you advocate and be proactive. Give up on what is “normal”. Scratch that from your vocabulary. These kids are extraordinary.

My biggest wish for people who meet Emmy is for them to know that it’s okay to look at her. Don’t turn your head or rush your kid away because you are embarrassed of them staring. She looks different and it’s highly unlikely that she will ever not look different. Introduce yourself and your child. Ask questions. Meet Emmy. See her. 

When she’s older, ask her to play. 

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What key changes would make this a more inclusive world for children with Pfeiffer Syndrome?
AS: 
Our kids have varying mobility issues that would obviously be helped with accessibility, but the biggest thing is being inclusive. A lot of our kids look different but are cognitively very typical. Include them and teach your kids that they are just kids who want to do the same things as they do.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: Emmy has a very active and supportive following on social media. How has this been important throughout her journey? How can other parents with children who have disabilities leverage social media to advocate for their kids the same way you’ve been able to for Emmy?
AS: 
Man, #TeamEmmy is a force. When we have a surgery or issue come up, we have an army behind us sending her prayers, positive energy, good thoughts, whatever. When she has a milestone met, she has thousands of cheerleaders. Both of those things are so powerful.

The other thing that is so important is just education— teaching the world about Emmy will hopefully lead to her being included more in the world.

Amanda and Emmy - Pfeiffer Syndrome Awareness

MTEAM: What’s one thing you’d like the world to know about Emmy or about Pfeiffer Syndrome?
AS: 
Emmy is pretty great. She’s not a typical baby but she’s really amazing. Her smile lights up a room and her.

Amanda and Emmy - Pfeiffer Syndrome Awareness

Candyce Carragher
10 Differently Abled YouTubers We Love to Follow

YouTube is an incredible resource when it comes to connecting with individuals who are differently-abled for whatever reason that may be. It's an amazing place to listen to stories, find out more what it means to live day-to-day with chronic illness, as someone who is deaf or autistic or who has a limb difference.

 
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There are many, many more channels out there that we could add to this list (so stay tuned for a follow up post or two down the line), but here are just 10 of the differently-abled YouTubers we love to follow: 

1. SPECIAL BOOKS BY SPECIAL KIDS. Chris, the host of SBSK, is not himself differently-abled, but he travels around the world meeting and sharing the stories of people who do have disabilities. His hope is to spread empathy and acceptance. Truly insightful, honest and often very funny.

2. ZACH ANNER. Zach is an award-winning comedian and he is hysterical to listen to! You may even recognize him from his own travel show "Rollin' with Zach" on the Oprah Winfrey Network back in 2011. He was born with Cerebral Palsy and talks about his diagnosis, daily life and travels.

3. ANNIE ELAINEY. Annie, a writer and advocate with Ehlers-Danlos syndrome, identifies as "a chronically ill, disabled, queer, Latinx, woman of color". Her channel covers all of these topics as well as some of her creative pursuits.

4. JESSICA KELLGREN-FOZARD. A TV presenter and producer in the UK, this is Jessica's personal channel. She shares her life with her wife Claudia and their dogs, her passion for vintage fashion and what it's like to live with disabilities and chronic illnesses. She's also a strong supporter of British Sign Language (BSL).

5. SAMIVAYA JD. JD is a "visually impaired, 2Spirit, Hopi with Albinism" as well as a member of the LGBT community. He talks about his intersecting minority labels, his experience as a legally blind person, his relationships, daily life and the traditional values of the Hopi community. 

6. STUMP KITCHEN. If you love to cook, definitely check out Stump Kitchen which celebrates gluten free vegan cooking, body diversity and the amazing, unique ways we move through the world. A YouTuber with a fantastic sense of humor who was born with a limb difference. 

7. CHRONICALLY JAQUIE. Jaquie was born with a number of genetic mutations and other diagnoses of chronic illness, some of which she addresses or links to in the video below. She shares her life with her husband Judd and her lovely service dog Harlow and advocates for those with disabilities that are often invisible.  

8. SPEECHLESS WITH CARLY FLEISCHMANN. Carly is a non-verbal YouTuber with autism and recently a finalist for a Shorty Award. She is brilliantly funny, conducting interviews and asking hilarious questions. Below is her first episode which features none other than Channing Tatum!

9. ROBYN LAMBIRD. Vlogging from Perth, Australia, Robyn (also known as T-Rex) was born with Cerebral Palsy. She is a strong disability advocate and consultant, androgynous fashion lover, wheelchair athlete and model. This video below is different from the usual vlogs you'll find on her channel, but we chose it because it's a fantastic spoken word piece. 

10. FATHERING AUTISM. We hear much more from special needs moms on social media than we do from the dads, so Fathering Autism is a refreshing take on parenting a child with autism and battling the stigma that comes with it. This channel gives a great insight into daily family life. 

BONUS 11: THE MTEAM, OF COURSE! Lastly, don't miss our own YouTube channel. It's new and we're sharing some of our favorite MTeam memories from the Best Buddies Challenge, messages from our captain John Christian and a few laughs along the way (Thanks Craig and Catherine!). Please stop by and subscribe!

Candyce Carragher
Meet the MTeam: Joe Whalen

Meet MTeamer Joe Whalen, whose own incredible life story gave him the connections and motivation that led him down the path toward joining us to support Best Buddies.

 
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Below, he talks about how a heart transplant changed the way he approaches the gift that is life, how his career and family have shown him the importance of the Best Buddies mission, and why he signed up during the after party of the 2018 Best Buddies Challenge to join us again for 2019.

Joe Whalen - MTeam Member for Best Buddies.jpg

MTEAM: When and why did you decide to join the MTeam?
JOE WHALEN:
 I joined the MTeam this past year. This was my first year with the team, but my journey to the team actually started about five years ago. Sounds strange, but it’s true. Five years ago, I was dealing with congestive heart failure and Meredith's grand aunt Ann was one of the people who was part of my care team out here in Springfield, MA. I was sent to Brigham and Women's hospital for further care and after over a year of hospital stays and procedures, I received a heart transplant. One of my care team members in Boston was another relative of Greg’s. Maureen (Ann’s niece) was one of my favorite nurses during my time at BWH. After recovery, I was back on my bike and started doing rides with a local cycling group. During one of those rides I reconnected with Ann, and after riding together a few rides, we discussed finding a charity ride or event we could do together. Soon after that, Ann presented the idea of riding in Best Buddies: Hyannis Port.

I knew a little about Best Buddies, and I have a cousin with global developmental delays due to an abnormal chromosome, so when Ann asked if I would ride with her, it was an immediate "Yes" from me to join the team. How could I pass up an opportunity to help a great family, whose family members had helped me in the past, as well as supporting a cause that I truly believe in?

Joe Whalen - MTeam Member for Best Buddies.jpg

MTEAM: Why is the MTeam and the Best Buddies mission important to you?
JW:
 The mission of MTeam and Best Buddies is important to me because I am a music teacher and every day I see how providing opportunity, support, friendship, and compassion can empower any individual to reach goals and achieve things that they may never have before. When we foster relationships that promote better quality of life, improve a skill set, or support advocacy for a cause, we are ourselves bettering our own lives as well as the lives around us. That is important to me. Not everyone has the chance to go to college and become a teacher, but we can all teach through our actions and will to help others.

Joe Whalen - MTeam Member for Best Buddies.jpg

MTEAM: What’s one thing you’ve learned from being part of the MTeam community?
JW:
 I learned that this community is so positive, kind, and so much bigger than I ever realized. I realized that we all have in our lives or know someone that may be affected by IDD.

Joe Whalen - MTeam Member for Best Buddies.jpg

MTEAM: What makes the MTeam special? What would inspire people to join you?
JW: 
For me, what makes the MTeam special is the feeling of family that seems to run through the group. I was unable to meet the team before the event since I live in western Massachusetts. It was difficult to come out for the pre-event training rides. However, when I arrived in Carver for the 50 mile ride, I was immediately greeted by other MTeam members who noticed my MTeam jersey. I had not been part of a team for any of my previous fundraising rides, and to be so warmly welcomed into the fold was awesome.

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MTEAM: Did you walk, run or ride in the 2018 Best Buddies Challenge? What about 2019? Describe the atmosphere of the event for us!
JW:
 I chose to ride the 50 mile event this year. I signed up for 2019 before I left the party after this year's ride!! The atmosphere was great. Everyone I came in contact with was in such a positive and happy mood, even after miles on the road. It was very uplifting to ride with so many like-minded people. From the people cheering us on the side of the road, to the support staff, and being greeted at the finish line by many of the buddies, it was all just amazing.

Joe Whalen - MTeam Member for Best Buddies.jpg

MTEAM: Tell us about your training regime and how you prepare yourself for the physical challenge.
JW:
 I did not have a specific training regime per se, other than to eat as well as I could and ride my bike as much as possible. I started putting in the miles in the winter, even when it was ridiculously cold. I prefer to be outside instead of on the trainer, but this winter challenged that for sure. When I went out, I tried to go on rides that might best mirror the Hyannis Port course. I did do a mass ride (the Five Boros Bike Tour) about a month before the BBC. Setting that as a target for my fitness let me know what I needed to do with a month to go before the Hyannis Port ride. Longer miles, and more elevation helped my physical stamina leading up to June 2nd. By the time the challenge rolled around, I had put in plenty of rides (over 700 miles since January) to get myself in shape.

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MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
JW: 
I personally have the motivation from receiving the gift of life four years ago when I received my new heart. I live every day understanding that I have been given a gift, and that I need to take care of that gift. I also understand that not everyone is as fortunate as I have been, which motivates me to do events like the Best Buddies Challenge. I continue to push myself to be better as a person and an athlete.

Joe Whalen - MTeam Member for Best Buddies.jpg

MTEAM: How did you feel when you crossed the finish line last year?
JW:
 I was tired; I had just ridden 53 miles as hard and as fast as I could. LOL! But, when I saw the finish line, and all the buddies, and the MTeam members and supporters, I felt great. I forgot I was tired and was thinking about my cousin Nick, and all the work I put in to get there, and most of all just how much good would come from all of this.

Joe Whalen - MTeam Member for Best Buddies.jpg

MTEAM: You were one of the MTeam’s top 10 fundraisers in 2018, raising over $2,000 for Best Buddies. Amazing work! Do you have any tips for new fundraisers joining us in 2019?
JW:
 I find the key to raising the funds is to keep asking. Use multiple outlets, Facebook, Twitter, email, etc. Most people you ask for support will support you, they just may need reminding of that. Personalize the emails you send out to your audience. You may want to change some of what you say in your email if you are talking to family members as compared to say co-workers or the general public.

Use pictures of yourself from your training. Action pictures will get people to understand you are serious about what you are doing. You can also ask a local shop (bike shop, sports store) to get behind you and put up flyers about your efforts. This will bring in an even wider possible donor base.

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MTEAM: Share an MTeam memory that has been the most powerful and inspiring for you so far.
JW: 
Meeting Merideth, Greg, and Laura at the post ride party was awesome. That was inspiring to me.

Candyce CarragherComment
8 Cycling Tips for the Best Buddies Challenge with Chiu Man

Meet Chiu Man, an avid cyclist and a Best Buddies Challenge participant who cycled 50 miles with the MTeam last year.

 
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He's been a part of the Apex Velo community for several years now and, as a seasoned cyclist, shares some of his top tips for getting started as a beginner, how to keep going once you're on the road and tackling a century ride. 

  Best Buddies Challenge starting line 2017

Best Buddies Challenge starting line 2017

MTEAM: Tell us a bit about yourself!
CHIU MAN:
 I have been working at EMD Millipore as a R&D Services Sourcing Manager since 2015. This is approximately the same amount of time that I’ve been associated with the Apex Velo community. As a dedicated & intermediate cyclist in 2015, I became part of this community when I decided to treat myself to a “bike fit” with the hopes of using my free time to improve my capabilities on my existing bike. Since that time, I have come a long way from the 16 mph rider to the 20 mph rider I am today. The services and community provided by Apex Velo helped me achieve this, while enjoying myself along the way. Beyond the community of cycling, I also enjoy the communities around competitive badminton and fine wine & spirits tastings.

  Sunday, fun day ride wide with Apex Velo

Sunday, fun day ride wide with Apex Velo

MTEAM: Share your experience of the Best Buddies Challenge in 2018. 
CM: 
This year, I participated in the 50-mile ride. Having trained for the 100-mile challenge, I felt sprightly when I crossed the finish line. I enjoyed meeting buddies and fellow riders along the way and at the finish, but my fondest memory is the camaraderie of riding alongside my friend.

  Meeting Tom Brady at the Best Buddies Challenge

Meeting Tom Brady at the Best Buddies Challenge

MTEAM: What are some of the most important features to look for if you’re purchasing a new bike with the aim to ride long distances, like the Best Buddies Challenge century ride, for example?
CM: 
It’s important to purchase a well-fitted and comfortable bike. There is absolutely no way to enjoy or endure a ride of this distance otherwise. Finding a bike shop that provides this expertise and commitment to service will be critical to helping make your century ride a comfortable success.

  Century ride sprint to dominate friends

Century ride sprint to dominate friends

MTEAM: The Best Buddies Challenge is in June 2019. Can you recommend a sample training schedule if those who are a bit rusty want to start getting into shape now?
CM:
I recommend getting out there and riding as soon as you can. There is no substitution for getting yourself acclimated to riding on the roads, as is necessary for the century ride. If you can attend a Best Buddies coaching ride or can ride alongside a seasoned BB participant, these will be helpful. The advice and insight you receive on such rides will be invaluable to your confidence and competence on the bike. (Re)establishing an understanding of how to ride (e.g. rules of the road, shifting, braking, turning, drafting) in different terrain or circumstances (e.g. hills, rough roads, sand, wind, rain, groups) will enable safe, effective, and efficient riding.

Fitness training is another challenge. Don’t rush to become the next Tour de France champion as this will inevitably end in frustration. Instead, establish a baseline of your capability and set attainable incremental goals (like milestones of distance, speed, duration). Allow the small successes to fuel your ambition for improvement. If you enjoy other cardiovascular fitness activities, these will certainly help prepare “the engine”, but they are not direct substitutes to engage all that is necessary for the Best Buddies Challenge.

 Ride to the top of Mt. Wachusett - training for the Best Buddies Challenge

Ride to the top of Mt. Wachusett - training for the Best Buddies Challenge

MTEAM: What’s your best tip for training on the hot summer days?
CM: 
a:
 Ride as the sun is starting to rise in the morning. It’s cooler and typically there are fewer cars on the road.
b: Ride in the early evening for similar reasons. However, wear bright clothing and use active lighting to increase your visibility to cars. If needed, you may also bring a bike light to increase your visibility of the road.

  "Pulled Pork" time trial - focused on the pull pork

"Pulled Pork" time trial - focused on the pull pork

MTEAM: How about freezing, snowy winter days?
CM: 

a: I typically do not ride when I cannot see the road (i.e. snow-covered). However, I will ride in the cold with appropriate layers, allowing myself to be slightly chilly at the start and to heat up with exertion throughout the ride.
b: Indoor trainers, like the Wahoo KICKR, are a useful and safe substitute for outdoor snow-covered winter cycling.

  My steed Black Beauty

My steed Black Beauty

MTEAM: What’s your number one cycling tip for beginners?
CM: 
Find an experienced cycling buddy to ride with you. Safety, assurance, motivation, and wisdom will be invaluable to developing your cycling experience. Joining a cycling club or a group ride is another good option.

  Harvard General Store - a frequent stop for refueling

Harvard General Store - a frequent stop for refueling

MTEAM: Mentally, what can help a cyclist find the motivation to reach the finish line and keep pushing toward new goals?
CM: 
a: 
Remember why you’re participating in the Best Buddies Challenge.
b: Have a friend or family member ride with you.
c: Have a friend or family member waiting for you at the finish line.

  My steed Pegasus

My steed Pegasus

MTEAM: Is there an app or a fitness accessory you’d recommend for keeping track of training miles, times and elevation?
CM: 
a:
 Garmin (with/without heart rate monitor, cadence sensor, power meter, or GPS)
b: Wahoo (with/without heart rate monitor, cadence sensor, power meter, or GPS)
c: STRAVA app on your smartphone
d: MayMyRide app on your smartphone

  Best Buddies Challenge 2018 finish line

Best Buddies Challenge 2018 finish line

MTEAM: What other fitness gear is important for cyclists who want the most comfortable ride?
CM:
a:
Properly fitted and well-ventilated bike helmet
b: Properly fitted and comfortable bike saddle
c: Properly fitted and breathable cycling shorts (and top like a jersey)
d: Properly fitted and well-ventilated cycling shoes
e: Cycling gloves

  Ride to the top of Mt. Wachusett - training for the Best Buddies Challenge

Ride to the top of Mt. Wachusett - training for the Best Buddies Challenge

MTEAM: What makes the MTeam special? What would inspire people to join you?
CM: 
The commitment and genuineness of leadership inspires participation.

  Meeting Untwon Jones, a one of the buddies

Meeting Untwon Jones, a one of the buddies

Candyce Carragher
10 Minutes With: Collettey's Cookies

If you haven't already heard of Collettey's Cookies, you will soon! Collette's Boston-based business now has interest across the globe and it's still expanding. Next year, a documentary about her company, by filmmaker Mary Mazzio, will lead the way to the White House where Collette is slated to fight to abolish the subminimum wage law and develop a policy that’s encouraging for companies to hire individuals with disabilities. Now a successful entrepreneur, Collette is fighting for inclusion, especially in the workplace. Of her own employees, half have disabilities, like Collette herself who was born with Down Syndrome.

 
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We met with her and her mother (and employee!) Rosemary for a chat about how Collettey's Cookies came to be, share a few laughs at some of their favorite flour-filled memories and hear about the real change that Collettey's Cookies is bringing about.

An interview with Collettey's Cookies

MTEAM: Tell us a bit about yourself.
COLLETTE:
 My name is Collette. I’m 27-years-old. I am from Connecticut. I was born with Down Syndrome. Now I’m living in Boston. One of the things I love to do is baking. I love to bake. A second thing I love to do is going to church. I like to go to concerts. And I love to take walks. I go to the gym. I take self defense and swimming.

An interview with Collettey's Cookies.jpg

MTEAM: When did you start Collettey’s Cookies and why?
COLLETTE:
I love to bake. Since I was in high school, I have been taking baking classes. I started my company in 2011.
ROSEMARY: The reason she started it in high school…
COLLETTE: ...is because it makes me feel good!
ROSEMARY: Also, the friends that she had most of her life, because we lived in a small town, just started branching away from having a relationship with Collette and Collette would come home and say, "I don’t know what I did to them, I feel like I’m invisible… It was a really, really, hard time. High school was a very hard time for Collette. She found satisfaction and happiness in baking. She used to bake us all kinds of things and then she made this one cookie which is her famous cookie now. We just said, “This is a really good cookie. You should write down the recipe and maybe you want to start your own business." We started to egg her on to start her own company, to empower her. 
COLLETTE: Since I got accepted to a math program at Clemson University, I decided to shut my business down then and just be a college student.
ROSEMARY: I don’t think she had intentions of opening it back up to be honest with you. I think when she graduated Clemson, she was really excited to move to the city of Boston and find a job working in the financial district, working for a big company. She was really excited about that, but it didn’t work out. 
COLLETTE: Because of me having disabilities.
ROSEMARY: People interviewed her like crazy, but nobody would hire her. That was a really tough time because she was thinking, "When will I be accepted? I went to college and I lived on my own. I moved to a city." She started baking again, so I said to her, "Why don’t you go to that little market that you like in North Boston and bring some of those cookies that are so good and see if they’ll sell them?"

An interview with Collettey's Cookies

MTEAM: How is Collettey’s Cookies helping to make the world a more inclusive place?
COLLETTE:
It’s really about hiring people with a disability.
ROSEMARY: She’s empowering people. She also wrote a workshop to teach other people to become an entrepreneur, so she’s going around and teaching that at different organizations and schools. She’s speaking a lot. Every day of the week, she’s speaking somewhere. She’s speaking at Hill Holiday. She’s speaking at University of Connecticut. She’s going to be at the Massachusetts Women’s Conference where there will be 12,000 attendees. I think she’s bringing a tremendous amount of awareness to how somebody who has a disability can be extremely valuable in the business community. 

MTEAM: How many people are on your staff now? 
COLLETTE:
Now, I have 13 employees altogether and half of them have disabilities. 

An interview with Collettey's Cookies

MTEAM: If there are other businesses who would like to be more inclusive but aren’t sure where to begin, what would you advise them?
COLLETTE: I would say focus on their abilities, recognize their abilities. People with disabilities can contribute and can be extremely valuable to an environment. 
ROSEMARY: They can also bring out the best in people. There’s no doubt about that.

An interview with Collettey's Cookies.JPG

MTEAM: Collettey’s Cookies has already been an international success. What’s next? Where do you go from here?
COLLETTE:
I can picture my company hiring more employees with disabilities and I’d like to grow globally.
ROSEMARY: To grow globally, she has some companies who have already spoken to her who are interested in a partnership. We would never have thought global, but they’re coming to us. So the goal now is to grow globally, to get enough awareness and support in sales and revenues to be able to do that. And honestly it’s very east to do with some very large market chains that want to back the initiative. We already have one in the United States and might have another one in Canada. The other thing is that Collette has a documentary starting this fall. She’s already working with a couple of organizations on that. At the end of the documentary, she’s going to be headed to Washington to try to get the subminimum wage abolished and to develop a policy that’s encouraging for companies to hire individuals with disabilities, like tax incentive. That’s the really big picture on where we’re taking this. The documentary comes out in 2019. It’s railroading right down to Washington. It’s already expected. It’s really cool. 
MTEAM: Does it have a title yet?
ROSEMARY: We don’t know! This documentary producer is very well known. Her name is Mary Mazzio. She has had a couple of private screenings at the White House with her shows. Her last show was just screened in the White House and they actually had a policy created because of her movie. Trump signed right off on it. So she’s pretty amazing.
COLLETTE: She’ll name it. I’m going to have a lot of cameras here in Boston everywhere I go!
ROSEMARY: Are you going to be running around steeling ice cream?
COLLETTE: That was me back then, not me now!
ROSEMARY: That’s one of Collette’s favorite sayings.

An interview with Collettey's Cookies.JPG

MTEAM: We heard you’re working on a collaboration with John’s Crazy Socks soon - another entrepreneur who was born with Down Syndrome. Can you tell us a bit about it?
COLLETTE: Yes, I am!
ROSEMARY: It’s still in dialogue. We’re not going to do it over the summer yet because it’s not really a big time to hype out a new partnership. We’re trying to put together some kind of a gift that involves a fun pair of their socks and cookies dipped in milk.

MTEAM: Is there anyone else you would really love to collaborate with in the future?
COLLETTE:
Yes, there is one: Ben & Jerry’s Ice Cream!
ROSEMARY: From the get-go, a collaboration with Ben & Jerry’s has been Collette’s dream - to see a collaboration between their ice cream and her cookie and put all of the money into creating more jobs. That would be her ultimate dream. She would be so happy. 
COLLETTE: We tag them on everything - Twitter, Facebook… I love their ice cream. My favorite is Cherry Garcia. And The Tonight Dough. And Chunky Monkey.

An interview with Collettey's Cookies.JPG

MTEAM: What advice would you offer to other entrepreneurial people born with Down Syndrome if they have big dreams but aren’t sure where to start? 
COLLETTE:
Design a business card, design a logo, a website, invoices and other things too. Get a good social media presence, PR and marketing. Develop a business plan and get a director of operations.

An interview with Collettey's Cookies.JPG

MTEAM: Share a favorite memory that you’ve experienced while running Collettey’s Cookies!
COLLETTE:
First of all, since we have been in the kitchen making big batches of cookies, my mom made a big mess with flour all over us. She put the mixer so high up, it created a snow storm!
ROSEMARY: I’m not a baker. If I’m in there, I have to be chaperoned!
COLLETTE: I have a friend Alex who works for me now. We were making a big batch of the dough. She was in front of me doing the eggs. I hate pouring egg by egg into the dough. It makes me gag.
ROSEMARY: She cracks about 40 eggs into one big bowl and with the sound of them dropping — glub, glub, glub… she walks out of there gagging. We all laugh about that. 
COLLETTE: It’s so funny. We have good memories. We laugh seriously.
ROSEMARY: We play tricks on people who take life too seriously. 
COLLETTE: We have a lot of fun: baking, laughing, teasing, music.

An interview with Collettey's Cookies.PNG

MTEAM: What’s one thing you wish everyone knew about Down Syndrome?
COLLETTE:
Being born with Down Syndrome is not always easy on people, especially when they try to find jobs. I wish that everyone knew that Down Syndrome people make great friends. They’re very funny too.
ROSEMARY: Sassy! Every person I’ve met with Down Syndrome is very sassy.
COLLETTE: She met me, so…! Two things to know: One is that they are very outgoing. The second is that they have good relationships.

An interview with Collettey's Cookies.JPG

MTEAM: Do you think we can change the way the world sees disability? Why or why not? Share a few of the simpler ways that the world could be changed by individuals or small groups of people. 
COLLETTE: Hmm. I hope so!
ROSEMARY: I think so. I think the impact that Collette’s making, that’s gone across the world, has shown us that that people are open, aware and now kind of interested. I think that because the disabilities population is getting larger and larger and larger, it is a topic closer to many people’s homes now. You either know somebody or it’s in your own family. Especially with autism which is growing so quickly, I think the whole world is trying to shift a little bit and trying to figure out how does this society and these communities blend? What’s the best way to help all of these kids blend without making them feel like they have to be like the typical population, so that they’re accepted as they are? 

I can tell you that in Collette’s company, she doesn’t pay anybody under minimum wage and there is a law out there that’s been around for 80 years — the sub minimum wage law — that you can basically pay somebody whatever you think they’re worth, and that’s wrong. When Collette wanted to hire people, for her it was more about them and learning about what they could be successful at. She always ends up finding their niche and giving them that position. I have to tell you that those employees are better than us in those positions because it means that much to them. They’re usually routine positions and they like a routine. Most people don’t like a routine. I gave up my own job to work for Collette! Ultimately, I think this topic has just gotten closer to home for everyone.

Follow Collettey's Cookies on Instagram or Twitter!

Candyce Carragher
14 Ways MTeamers Can Leverage Social Media for Fundraising

Did you know that 55% of people who engage with nonprofits on social media end up taking some sort of action? 59% of those people donate money. Social media is becoming one of the most powerful places to reach potential donors and connect with people who are passionate about your cause - including the disability advocacy that we're all doing through our support of the MTeam!

 
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Here are a few ways you can make it work for you as you strive to reach your $1,650 contribution goal as a team member: 

1. SELECT ONE OR TWO SOCIAL MEDIA PLATFORMS. Choose your weapon: Love to take photos? Instagram's brilliant. Witty with words? Try Twitter. Feel comfortable on Facebook already? Stick with it! If video's your thing, YouTube it is. Focus on one or two; there's no need to be everywhere. Whichever your social media platform of choice, be sure to complete your profile and add a photo of yourself. 

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2. DECIDE ON A POSTING SCHEDULE AND STICK TO IT. Once you've decided where to focus your efforts, decide how many times per week or day will be realistic for you to update. To max out your efforts, we'd recommend once a day on Instagram or Facebook, several times each day on Twitter as it moves more quickly or one quality edited video each week on YouTube. Be sure to stick to whichever schedule you choose. Consistency is key. Use tools like Hootsuite for Twitter or the built in scheduler on Facebook or the Later app for Instagram to schedule content in advance and save yourself some time. 

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3. SHARE YOUR GOALS AND PROGRESS. Your supporters want to be sure you're sticking to your goals and those who have donated already will love to see your progress too. It will help you keep yourself accountable too. Keep your followers updated with posts that show you're training for the Best Buddies Challenge, that you're eating healthy to get in better shape before next June, or that you're reaching your fundraising goals each week. You can share the MTeam's Fundraising Friday posts from Facebook or Instagram to show how the team is progressing toward their goals overall. Prospective donors will see you're serious and passionate about what you're doing and they need to know that to feel inspired enough to support you.

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4. CONNECT WITH THE RIGHT AUDIENCE. Decide who you think will most likely donate to your cause and try to connect with them on social media. See some of the stats at the end of this post for a few clues on who to start with and build your network from there. You can find people who love to support charities or people who advocate for people with disabilities by exploring different hashtags like #justgive or #disabilityadvocate, for example. You can also use location searches to find people from your local community. Consider connecting with people who already follow Best Buddies - they know and support the organization and may be more willing to donate.

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5. ADD HASHTAGS TO EXTEND YOUR REACH. Hashtags can be a great way to extend your reach, especially on Instagram where you can add up to 30 on each post (hint - add one or two in the description then immediately after, comment with an additional 28). Two hashtags per post are enough on Twitter and one will do on Facebook. Especially if you're using Instagram, keep a list of hashtags in your phone notes that you can copy and paste from for speed. Be sure not to be spammy; use hashtags that are appropriate and mix them up each time. Interact within the hashtags you're using. Here's 10 to start with that you might find useful: #fitnessinspiration #charityrace #charityride #charityrun #raisingawareness #pleasedonate #bestbuddiesinternational #trainhard #milesforbreakfast #givemoretogether

14 Ways MTeamers Can Leverage Social Media for Fundraising.jpg

6. USE VIDEO. There are some impressive stats around the use of video in 2018 and how engagement increases on those posts - live video, especially. There's no shortage of platforms on which you can share video these days - regular Instagram posts, Instagram Stories, Instagram's new vertical IGTV, Facebook Live video... and the list goes on. Check allowed video length for each option before you post. No need to do a lot of formal editing, or often any... Keep it authentic; just stop in the middle of your cycle training ride and share a few thoughts or a bit of beautiful scenery!

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7. MAKE IT EASY TO DONATE. It should be crystal clear to followers where they can go to donate to your fundraising efforts. If you're using a platform where you can share a link in your bio, be sure to share the direct link to your personal fundraising page and add a simple "(link in bio)" when you ask for donations. If you're allowed a link within your posts like you are on Facebook and Twitter, just remember to post it for easy access.

14 Ways MTeamers Can Leverage Social Media for Fundraising.jpg

8. SHARE MTEAM CONTENT - SOCIAL MEDIA POSTS, PHOTOS AND BLOG POSTS. If you don't already follow the MTeam's main social media accounts, you can find us on Instagram, Facebook, Twitter and YouTube where we post content regularly. Please find us and interact with our posts, especially by sharing them with your own networks to extend our reach as a team and share content that will be relevant to people who will support you too. A few blog posts you might also like to share include our interview with Greg and Laura Lewis sharing our Chief Motivating Officer Meredith's story or our chat with Best Buddies Ambassador Dan "Dangerous Dan" Bivins. 

14 Ways MTeamers Can Leverage Social Media for Fundraising.jpg

9. BE SOCIAL: FOCUS ON ENGAGEMENT OVER QUANTITY. You're more likely to succeed on social media if you're social yourself. The more you interact with the content posted by other people, the more engagement your own posts will gather - and engagement is always more important than the number of posts you send out. Take time to leave genuine comments and build relationships with the network of people you're connecting with on social media. 

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10. LET YOUR EMOTIONAL CONNECTION TO THE MTEAM SHOW. Why did you join the MTeam? We all have a "Why". For many of the team members, the inspiration was Mer and her beautiful smiles and seeing how hard it can be for a family to care for a child with a disability. The "Why" is because we wanted to help. Perhaps you have a your own personal story that lead you to sign up and support Best Buddies. Perhaps you know someone with a disability. Perhaps you're doing it as a motivator for fitness. Whatever it is, sharing your reason for supporting the MTeam will help inspire others to support you. 

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11. ASK DIRECTLY FOR DONATIONS, BUT NOT ON EVERY POST. A direct ask for donations is often necessary and will help you reach your fundraising goals more quickly, but ask too often and either your audience will become disinterested or your message will be diluted and easy to ignore. It's important to provide value in the content you share beyond asking for donations. Give people a reason to follow you and keep coming back. Posts that add value tend to do one of four things: educate, inform, inspire or entertain. Refer to number 8 above!

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12. CHECK YOUR INSIGHTS AND REVISE. Sometimes, especially at the beginning, experimentation is necessary to see what sort of content your audience is connecting with and engaging with the most. Take note of which are your most popular posts every few weeks or so and see which ones didn't get quite as much attention. If videos get more engagement than links, post more videos. If photos get more engagement than just text, post more photos. Do your longer or shorter posts do better? Do posts with faces or without do better? Did you use certain hashtags in one post that did really well? Did you hop on a trending topic and reach a wider audience? Revise your strategy accordingly.

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13. SAY THANK YOU! One of the most important tips you can adopt is to say thank you to your supporters! Thank them individually with social media shoutouts. Thank them whenever you share your progress toward your goals. Thank them every chance you get. Gratitude goes a long way. 

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14. BUILD YOUR OWN #GIVINGTUESDAY CAMPAIGN. Lastly, a bonus tip: Put November 27, 2018 in your calendar and create your own campaign around this global giving movement. Fun fact: Facebook refers 29.4% of traffic to donation pages on #GivingTuesday and the hashtag is almost always trending. 

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A few interesting stats from Non Profit Source:

  • 69% of the American population donates.

  • 64% of people who donate are women.

  • 30% of giving occurs in December.

  • 10% of annual giving happens in the last three days of the year.

  • Online giving grew by 12% last year with $31 billion in donations.

  • 57% of who watch nonprofit YouTube videos go on to make a donation.

  • $128 dollars is the average online donation amount.

  • 88% of millennials give to charity with an average annual donation amount of $481.

  • 59% of Gen Zs are inspired to donate to charity by a message/image they saw on social media.

  • 21% of donations are directly through social.

Candyce Carragher
Meet the MTeam: John Christian

Meet MTeam captain John Christian. This will be his fourth year in a row completing a century ride for the Best Buddies Challenge, a year to focus on growing the MTeam community and reaching the biggest fundraising goal yet - $250,000. 

 
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Below, John talks about the evolution of the MTeam since he started it in 2016 and the importance of setting lofty goals, what it felt like to be one of the top individual fundraisers in 2018 and about the MTeam's biggest sponsor, CAPA The Global Education Network's involvement in the Best Buddies Jobs program.

MTeam Captain John Christian Interview.png

MTEAM: Let’s start at the beginning: Tell us the story of how you decided to get involved with Best Buddies and start the MTeam.
JOHN CHRISTIAN:
 A former CAPA The Global Education Network colleague, Greg Lewis, told me about Best Buddies. Greg and Laura’s daughter, Meredith, was born with FOXG1 Syndrome. It’s a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene. It impacts brain development and function. It’s severe and difficult. Meredith suffers from seizures, is unable to control body movement, and she does not speak verbally. I say verbally because she definitely communicates in other ways. She has the most amazing smile. When she smiles at me I melt. Well, not just me; others have that experience too. She inspired me to start the MTeam, named after her, of course. I saw how difficult it can be to be a family and care for a child with an intellectual or developmental disability. I wanted to find a way to help and realized that I could set up a Best Buddies Challenge team in support of Meredith and FOXG1. 

So, in 2016, I asked my brother, sister-in-law and some good friends if they would participate in the Best Buddies Challenge in Hyannis Port, Massachusetts. They immediately agreed and six of us began fundraising. By the end of the Challenge, we had raised $11,500. Having never done anything like this before, we were pretty proud of our result which motivated us to immediately start building our team for the following year.

Interview with MTeam captain John Christian.jpeg

MTEAM: Why is the MTeam and its mission so important to you?
JC: 
Giving back has always been important to me. I wouldn’t be where I am today if I didn’t get help along the way. Because others reached out to give me a boost, I want to do the same. I want to help people like the Lewis’. I got really excited when Greg told me about Best Buddies International and how they help people and families with IDD. I just knew this was the right path for me. Over the past three years, the MTeam has not only raised over $260,000 for Best Buddies but we’ve spread awareness about IDD and FOXG1 as well as how important inclusion is for everyone. Our MTeam community is built around awareness and inclusion.

Interview with MTeam captain John Christian.jpg

MTEAM: What’s the most rewarding part of your role as team leader? And the biggest challenge?
JC: 
The most rewarding part of being the MTeam captain is having the chance to meet families and friends who have children or friends with intellectual and developmental disabilities. Greg and Meredith both participate in the 5k run at the Best Buddies Challenge. She has a chair and they run together. Watching the love and inspiration around her is what makes this so rewarding. The challenge is building a genuine community with all the MTeam members. Last year, we had 54 people and we really tried to make sure everybody felt a part of our work in raising money for Best Buddies in a very personal and inclusive way. Next year, we hope to have 100 people and so the challenge will really be to make sure everyone understands why it’s so important to commit to this work to build our community year after year.

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MTEAM: What are your goals for the MTeam throughout the rest of 2018/early 2019?
JC: 
We have lofty goals but that’s who I am and what I do. Why go small? Go big! It’s so important to have goals. The MTeam’s 2019 goal is to increase the number of teammates to 100 and to raise $250,000 for Best Buddies. I believe wholeheartedly that we will reach this goal. We always do. I have to say, the goal is not just to raise money; while this is critical to real impact, we are also trying to raise awareness through storytelling and images of real people like you and me who just want to be a part of a community, who want a job, friendship, and inclusion. When I speak about the team and Best Buddies I always remind people that one of the tag lines for Best Buddies is, “I see you.” I love this because it's so important. When you see a person with an IDD, their family and friends on the street, just look up and smile. One smile can change a person's whole world. That's how important it is.

MTeam Captain John Christian Interview.jpg

MTEAM: What makes the MTeam special? What would inspire people to join you? 
JC:
 We have so much fun. Throughout the year, the MTeam holds events such as spinathons and our large spring gala. Helping people feels good. Words cannot describe the feelings when completing one of the Challenges, whichever one you choose. Kids and families from the Best Buddies programs are there and you see firsthand how much just showing up inspires and helps. I wish I could share those feelings with everyone. If I could, everyone would join! We are a team, we practice together, fundraise together. There is a camaraderie that has come out of the creation of this team and it’s not just the Challenge participants, it’s an entire community. Whether you follow us on Facebook, InstagramTwitter or YouTube, or are family and friends of Challenge participants, you are a part of this community. We receive all kinds of support, not just financial.  People donate their time to help train us, use their knowledge and skills to help us communicate better. I’ve met, and become friends with, so many amazing people that want to help. And the beautiful part is that this all stems from Meredith. So, you see, when you see someone with a “disability” (I don’t even know what that word means anymore), they have abilities that no one else has. They can change your life like no one else will. Humans shy away from different, but we should cherish and nurture it. It can be a gift. It’s all in your perspective.

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MTEAM: Mentally, what helps you reach the finish line and keep pushing yourself toward your goals?
JC:
We have so many goals and finish lines throughout the entire year and we just push to reach them all. We have a great team that works behind the scenes and we all are working towards the goals together. I have this innate sense for setting big goals and then inspiring people to reach them. I like coaching people in that sense. Having a goal that looks unattainable to others and watching us reach that goal is priceless.

MTeam Captain John Christian Interview..jpg

MTEAM: You were one of the top individual fundraisers for the Best Buddies Challenge in 2018. How did that feel? 
JC: 
It was an amazing feeling. I love a challenge and I’m very competitive, so a leader board like that is right up my alley. I can’t lie, it feels great. My personal fund was the third largest of the whole event. But it's not really about being at the top of the list, it's about knowing that when I reached out to my friends, family and professional community that they were in support of this amazing work that we do. Coming in number three was great, but what I really care about is that we raise enough money so that we can help over 200,000,000 people are desperate for love, life, community and purpose. 

MTeam Captain John Christian Interview..jpg

MTEAM: The MTeam’s lead sponsor is CAPA The Global Education Network, of which you are the CEO. Talk a bit about CAPA’s involvement with the Best Buddies Jobs program and what this means to you.
JC:
 Best Buddies is one of CAPA’s designated charities. That’s how important this is to us. Diversity and inclusion has always been an important personal value. At the base of it, CAPA’s mission is to give as many students as possible the opportunity to study abroad because we know that affects the world positively. That means, all students - those who believe they don’t have the money, students of all sexual orientations, students of all races and cultural backgrounds... No matter how a student identifies, at CAPA we want them to have this opportunity. We do what we can to ensure they can go abroad and have the most meaningful experience. Sending students to another country to live and study gives them opportunities to discover themselves and people who are not like them. This causes them to think differently about their world. They come home changed and that impacts those around them. At CAPA, we believe that this is how we make the world a better place. Best Buddies does something very similar. They give people with IDD the opportunity to learn about themselves and how to interact with people who are different than them. They aim to get people together to create friendships, community and employment opportunities. They spread awareness so that everyone has a seat at the table. The more we are around people who are different than us the more accustomed we become, the less afraid we are, the more connections we can make. This is how we make the world a better place.

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MTEAM: Share the MTeam memory that has been the most powerful and inspiring for you so far.
JC: 
That’s easy. It was the night we had our first fundraiser. Greg, Laura and Meredith along with Greg’s family, came to the event and told the story of Meredith’s life. Greg and Laura shared some very special and beautiful moments about raising Meredith. I watched the group of about 50 or so people smile, cry and laugh with them. I felt so inspired. I saw the beginning of a real community and real love. I was hooked after that. I really want to thank them for bringing us into their lives. It has changed many of us forever.

A Best Buddies Story: Dan "Dangerous Dan" Bivins

Dan Bivins, better known by his nickname "Dangerous Dan", is a familiar face to anyone who has been on the MTeam in the past. In fact, he's giving the intro to one of our videos from the 2018 Best Buddies Challenge.

 
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Dan has taken on the important role of a Best Buddies Ambassador, advocating for an organization that has given him great support and friendship over the years. In his capacity as an ambassador, he has met celebrities and many other inspirational people, has sung the "Star-Spangled Banner" in Washington DC and has been an inspiration to many people himself along the way, us included.

Below, we take some time to get to know Dan a bit better, find out the meaning behind that nickname and hear all about his connection to the organization we run, ride and fundraise to support.

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MTEAM: Tell us a little bit about yourself!
DAN BIVINS:
 Hi, my name is Dan Bivins. I am from Massachusetts. I am a Best Buddies Ambassador for the State of Massachusetts. I am Director of Best Buddies for Stonehill College. I love to sing and make music videos. I'm doing a project working on a music video "Too Cool for School". Casey Desmond and Mary Desmond are helping me out with my song and music video. 

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: When and how did you become an ambassador for Best Buddies?
DB:
 I got an award at Milton High School to become a Best Buddies Ambassador.

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MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
DB:
 I traveled to Miami, Florida and California. Rick Springfield asked some people to come up on stage at the Best Buddies Clambake for the Best Buddies Challenge in Washington, DC to sing the "Star-Spangled Banner."

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MTEAM: What do you love most about the Best Buddies? How have they helped to support you?
DB:
 Best buddies is amazing. I love it so much. It gives me a family. I love Best Buddies, all my family and friends supporting me. 

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: Do you have a favorite memory from the Best Buddies Challenge this past June?
DB:
Best Buddies Challenge is amazing! I love want I do. I worked hard. I have a lot of memories at Best Buddies Challenges doing rest stops and being host for Best Buddies Challenges.

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: How did you get the nickname Dangerous Dan? What does it mean to you? 
DB:
My nickname is Dangerous Dan. I made it up all by myself. It's positive and says just be yourself, be how you are, never change how you are, never give up, be yourself.

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MTEAM: Have you met anyone through Best Buddies who really inspires you? Who? 
DB: 
Anthony K Shriver inspires me.

Dan 'Dangerous Dan' Bivins.JPG
Dan 'Dangerous Dan' Bivins.JPG

MTEAM: You were featured in one of our recent videos - thank you! What would you say to someone who is thinking about joining the MTeam? 
DB:
Come on guys! Join the MTeam! It's amazing!

Dan 'Dangerous Dan' Bivins.JPG

MTEAM: Tell us about the short film you made with Sasha Pedro! Can we share the film with our readers? 
DB:
My friend Sasha did a project in school and asked me to make a documentary. I said yes, go for it!

MTEAM: What would you say to someone who was thinking about supporting Best Buddies but not sure?
DB:
Best Buddies is amazing. Be apart of it! It's fun!

10 Minutes With: Momma Fox Toys

Meet Alea Morren, entrepreneur who started Momma Fox Toys, inspired by her son Adlai who was born with a rare genetic condition called FOXG1 (follow their story on Instagram or Facebook). 50% of her profits are donated to support the International Fox G1 Foundation.  

 
10 Minutes with Momma Fox Toys.png
 

Words and photos by Alea Morren

As the owner of a small business making handmade trendy items for children, I've always worked from a place of being inspired. My son, Adlai (AD-lay), was the spark that lit a fire in me, helping me find a channel for my creative energy. 

 Alea with Adlai

Alea with Adlai

I began making specialized sensory toys and bibs for Adlai in late 2014 when we were living in Montreal, Canada. He was around 3-years-old at the time. It corresponded to a time of improved sleep for me, since Adlai's medical condition was stabilizing. 

In 2015, we relocated to Pittsburgh PA, mainly for the weather (lol!), schools and services for Adlai. I set up shop in the basement and started making products for infants, toddlers, and older children (up to age 10). My main products are baby shower gifts (blankets, burp cloths, bibs), items to help toddlers look cool while simultaneously messy (bandanas), and items to engage imagination for older kids like chef sets/art aprons and tool belts. I also started making more items for mothers like bags, nursing scarves and nursing pads. But my special niche is items for special needs children/people, which include sensory toys, large/oversized bibs, tie bibs and wheelchair capes.

 Circular sensory toy

Circular sensory toy

I have always been interested in artistic projects. As a child I made up games creating color combinations and loved having coloring competitions with my friends. I was good at drawing and loved the attention it gave me, (attention deprived as 1 of 5 children). In school, my favorite part of book reports was creating the title page.  

After high school, I entered a special art school with studio courses in everything from sculpting and painting to ceramics and textiles, and subsequently went to University for Interdisciplinary Studies in Fine Art in Montreal. Suffice it to say, I've always had an artistic bent, and have always coped with stress through some form of it (journaling, painting, drawing).

 Baby shower gift set bundle

Baby shower gift set bundle

So why is Adlai my inspiration? Adlai is very unique. He was created with an extremely rare genetic mutation (about 300 people known to have it in the world), called Fox G1. Mainly, it affects the brain, and as a result, much else in the body is also affected--low muscle tone, digestive issues, immune issues, and vision problems. His brain is smaller than normal, and he has fewer neurons. His brain is simplified, with fewer folds than the typical brain. The front and back are less developed, and the hemispheres are very weakly connected. As a result, he has seizures, difficulty learning, remembering, and doing higher order things, like speaking, walking, and even sitting up without support.  

His early first couple of years were very hard, to put it mildly (living hell to be precise). His immunity was poor, and he would get sick easily and suffer greatly. He has severe reflux, and due to the pain from that, would scream daily from 1am-4am, without pause. He struggled to cope with the sensory input from his surroundings--loud noises, certain textures, etc. would set him off. Going grocery shopping or to the mall was no fun. No fun at all. When he started trying to eat solids, at 10 months, it would take three hours to feed him (after an Olympian effort), and by then it would be time to eat again. At 1-year-old, we received the diagnosis of FoxG1, and over that next year, we had about four terrifying ambulance rides to the ER until his seizures were under control.  

 Matching Momma shirt and baby leggings

Matching Momma shirt and baby leggings

Living through those years was very difficult and I also had his older sister, Arielle, to raise. I rarely slept and struggled with depression. But once some things got a little easier--for example, establishing some therapies, figuring out feeding strategies, finding resources around me (six hours of respite each week--yay!), I was able to apply what I was learning about sensory processing disorders and some neurology into improving Adlai's life. I started to make toys that had lots of ribbons and high contrast colors, with textures and colors he liked, since the toys in the stores were often too loud, hard, and bright. I needed toys that could strap down to his tray, to allow me to have time to make a meal or do a quick chore with him playing nearby.

Adlai was seriously the messiest eater I'd ever seen! I decided to try making bibs (large full ones) that would stand up to that mess. So my bibs are cotton on the front, to absorb liquid (otherwise it was in his lap), and waterproof underneath (cause they get soaked!), with adjustable snaps at the neck to last a long time.

 Baby shower gift set - Elephant March

Baby shower gift set - Elephant March

From there it was pure evolution. I'd have an idea, and try to make it. It was becoming my outlet. I started to feel a bit more normal. Eventually, I had baby showers coming up and started getting more creative. I went all out, making baby blankets and burp cloths. Then I started thinking about what I could make for my older daughter (then age 5) and made an art apron, oven mitts, and a cute chef hat. Then it was a carrier for her doll, worn like a Baby Bjorn carrier, and things have just continued from there. I have a 1-year-old now (soon to be 2) and so I started making teethers and baby hats and stuffed dolls, and now I'm really into baby leggings. I am continuously thinking of my kids and what they're into and use them to test my products. My oldest even consults on fabric choices and styles sometimes. In fact, my favorite thing to do while nursing my baby (and that is seriously hours in those early days), was designing products in my mind that would address some need or problem or have some unique feature. The kids would finally be down to sleep and I'd run downstairs at 9pm and sew until midnight! 

This last year, I've been working a bit less on new product design, and more on stocking for craft fairs like Handmade Arcade (such a good fair!). I sell in a local shop (So Me Jewelry and Gift Shop) and produce for custom orders.  

 Tool belt with zipper pocket and pouches

Tool belt with zipper pocket and pouches

With the birth of Anna in 2016, it's been a challenge to be productive and to have regular working hours (as any mother of young children knows), but I still find sewing to be a healing process for me. Having my own "work", separate from my children is vital. It allows me to reconnect with myself-the person I was before kids and before disability, to find my 'flow'. I work in a spirit of service and try to channel love as I work. 

I consider each piece I create to be a work of art, one that has come into the world through me, and often also through collaboration. I love to hear about who the piece will go to. If I'm making a baby shower gift set (my best seller), I like to find out about the mother, her style, her preferences, if there are siblings, things the family really likes, and get a sense of that family before I sit down to design. Then I'll confirm with the person ordering and proceed. I've had a couple people come back to me to report that their gift was the favorite of the shower! Hearing that makes all work and sacrifice worth it.  

 Alea with Anna in Momma Fox bib

Alea with Anna in Momma Fox bib

I'm looking forward to a time when I can dedicate a solid block of time each day to building up the business (producing more, getting into more stores, serving more people) to ultimately be able to donate more the International Fox G1 Foundation, which funds research and supports families of children with Fox G1. 

This Foundation was started by five mothers of children with Fox G1 in 2012, and at that time, was virtually the ONLY source of information on the condition back then (it was founded in the same month we got our diagnosis). Now, this incredible group supports families like mine with a toy sharing program, acquiring medical equipment and hosting conferences to network and share knowledge. They're working with groups like the Retts Foundation, and others who support knowledge about people with neurological disabilities. They are a force!

 Reversible waist apron with pockets

Reversible waist apron with pockets

So I am one of about 300 other Momma Foxes out there! I named my company Momma Fox Toys in Adlai's honor, understanding that every child has the need to play and learn to the fullest that their capacity will allow. Whether I'm making a custom toy or wheelchair cape, a baby blanket or nursing pads, what I'm trying to do is to use my gifts and talents to solve a need, to make life a little easier, to create more beauty in the world and to touch the hearts of everyone I interact with. That is certainly one of the many things Adlai has taught and shown me.

In fact, Adlai is one of my best teachers. Adlai cannot speak with his mouth, but he communicates love so clearly. He is simple but also pure. He is difficult at times, but never malicious. He will always be innocent. His smile lights up a room, and when he looks directly at you with those huge blue eyes, it's like the sun is shining on a cloudy day. He is so utterly beautiful and I know that he is how he is for me, for you, for the world to learn something. People like Adlai test us. They test our compassion, our humanity, our maturity and our character. The test is for me, as his parent, for his siblings, for his caretakers, and ultimately, for society at large.

 Sensory toys - gifts for Adlai's classmates one christmas - crinkles, bells, metal, wood, soft, smooth, snap, pull

Sensory toys - gifts for Adlai's classmates one christmas - crinkles, bells, metal, wood, soft, smooth, snap, pull

This past spring Adlai moved into a residence for people with special needs. They have 24/7 staffing and can meet Adlai's needs in a more sustainable way than we can at home. He is safe, and thriving. We are also less stressed and more capable of meeting the needs of our other kids and life is a little bit calmer (to say the least). I am so grateful that we can see Adlai regularly and can participate in special outings with him and the whole family. I'm at what a good friend referred to as, a "fertile void". I'm adjusting to my new reality, reassessing where I'm at with things, seeing how the girls are responding to this major change, and I'm looking forward to what comes.