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MTeam Fundraising: Supporting the Best Buddies Jobs Program

As we reach the middle of National Disability Employment Awareness Month, we wanted to take a deeper look into the work that Best Buddies International does to help bridge the gap in employment for people who have intellectual and developmental disabilities. This is one branch of Best Buddies that the MTeam fundraising efforts support each year. Below, a few words from the Best Buddies Jobs team:

 
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“Observed annually in October, National Disability Employment Awareness Month (NDEAM) celebrates the monumental contributions of employees with disabilities and highlights the importance of inclusive workforces. This year’s theme – “The Right Talent, Right Now” – perfectly embodies the life-changing work at Best Buddies to integrate people with intellectual and developmental disabilities (IDD) into the workforce and strengthen our entire economy. 

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With help from team members, volunteers, donors and community members, Best Buddies matches skilled and qualified individuals with IDD with businesses seeking enthusiastic and dedicated employees.  The Best Buddies Jobs program develops partnerships with employers, assists with the hiring process and provides ongoing support to the employee and employer, ensuring that individuals with IDD have the opportunity to earn an income of their own, work in an environment alongside others in their communities and contribute their talent and gifts to the rest of the world. 

The Best Buddies Jobs participants add significant value to the workforce, including offering diverse perspectives for organizational success and fast-tracking progress towards equitable and sustainable development. Best Buddies Jobs program has participants employed full time who each have the potential to earn a total income upwards of $1 million over 30 years and contribute $250k in taxes back into the economy.

 
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One of those Best Buddies participants is Dudley Williams III. As a Marketing Coordinator in John Hancock’s Sponsorship and Event Marketing Department, Dudley represents the epitome of a highly-successful employee. After graduating from the Lesley University Threshold Program several years ago, Dudley joined Best Buddies Jobs in Boston to work toward his professional goals. Within a few short years, Dudley has become not only one of the strongest spokespersons for Best Buddies Jobs in Massachusetts, but has realized his own ultimate goal of having a full time job with benefits. Dudley is a very hard worker, dedicated to his own self-improvement, and a tireless advocate for employment for people with IDD. Watch the Best Buddies video honoring Dudley Williams

Join the global movement right now by supporting Best Buddies Jobs as we all work to create more employment opportunities for the right talent.” 

Candyce CarragherComment
10 Minutes with: Erin Harris

Meet Erin Harris, mom to two girls, Verona and Avalon. Below, she talks about Avalon’s FOXG1 Syndrome diagnosis, the incredible relationship her daughters share, and some of the ways that the world could become a more inclusive place to live.

 
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MTEAM: Tell us a bit about yourself and your family. 
ERIN HARRIS:
Hi! I’m Erin! My husband is Craig. We have been married for 10 years and together for over 17 years. We have two amazing daughters – Verona and Avalon. We live in New Hampshire, USA. Craig and I both come from creative marketing backgrounds for work. He heads up the in-house Creative team for a footwear manufacturer in Boston. And I do freelance copywriting, editing, and content creation from home. Before kids, Craig and I through-hiked half the Appalachian Trail a year into our relationship. It taught us a lot about teamwork and finding humor in all the things. We also traveled a lot for both work and fun. We still love to hike when we can with our gals, go exploring in nature, take road trips to the ocean or lake, garden in our backyard, listen to music on our porch, and enjoy all the downtime we can possibly muster.

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MTEAM: Your daughter Avalon was born with FOXG1 Syndrome. Can you explain what that means to anyone who is hearing of this for the first time? How has it manifested itself in Avalon’s case specifically?
EH:
FOXG1 Syndrome is a rare neuro-developmental disorder caused by a change to the FOXG1 gene on the 14th chromosome. There are around 500 cases diagnosed worldwide. Avalon has what is called a missense mutation – a random, non-inherited swapping of two letters in her genetic code that stopped the production of forkhead box G1 protein. This protein is critical for early brain development and function. As a result, Avalon has microcephaly, or a smaller head size, and dysgenesis of the corpus callosum. The corpus callosum is sort of like the super highway that connects the right and left hemispheres of the brain. In Avalon’s case, her corpus callosum is slightly thinner and truncated. As a result, she experiences global developmental delay – meaning her motor skills, speech, cognitive skills, and social and emotional development are going to happen at their own pace. Avalon also has intractable focal epilepsy, which means she experiences clusters of breakthrough seizures that are very difficult to control with medicine. Avalon has hypotonia, or low muscle tone, in her trunk/core making it hard for her to sit independently or crawl. She has a chorea movement disorder that causes involuntary, unpredictable body movements.

Avalon also has esotropia, or intermittent inward eye turn, and cortical visual impairment (CVI). CVI means that Avalon’s brain has a harder time interpreting what her eyes see. After 17 months of patching her right eye daily, Avalon had eye muscle surgery in January 2019 to help correct her eye turn. That surgery has made a world of difference for her! Now she can reach and grasp toys, track objects, and see farther away. 

 
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MTEAM: Tell us more about Avalon! (How old is she? What does she love most? What makes her happy? What makes her uniquely Avalon??)
EH:
Avalon is turning 2.5 on October 9th! She is a snuggly lovebug. Avalon has a cheeky personality, is naturally inquisitive, and can be quite goofy. Although she is nonverbal, Avalon is so expressive with her vocalizations, sighs, and the way she raises her eyebrows when she’s delighted or furrows them when she’s upset. Avalon makes excellent eye contact and is very social, which can be unusual for kiddos with FOXG1 Syndrome. Most kiddos with FOXG1 Syndrome love water and music, and Avalon is no exception. She loves water – whether it’s splashing in the bathtub, swimming in a lake, hanging at the beach, or enjoying her weekly water therapy sessions. Avalon also loves music. We spend our days singing lots of songs, and she really enjoys playing with musical toys and keyboards in particular. Avalon is a sensory seeker – she loves vibration. She tries to get proprioceptive input regularly through her jaw. She will rest her jaw on her fist or find a way to put pressure on her jaw with a vibrating toy. For someone who has limited purposeful use of her hands, we are always impressed with how Avalon works to meet her sensory needs. She also loves to swing, whether outside in her toddler swing, in a hammock, or in the sensory swing at physical therapy. Avalon craves the vestibular input that swinging provides, plus it’s lots of fun!

 
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MTEAM: What’s a typical day in Avalon’s life like?
EH:
Though we try to keep Avalon to a pretty consistent schedule, there really is no typical day for her. This can be extremely challenging and exhausting. Depending on how she has slept or how she is feeling can change our day all around. In general, Avalon is a poor sleeper. This is consistent with most kiddos who have FOXG1 Syndrome. Avalon might be up on and off all night, or sometimes she is wide-awake in the wee hours of the morning. Once Avalon is up for her day, she gets seizure medicine, I nurse her, and then she might do a bit of swinging or playing on the floor. Then Avalon has breakfast and more seizure medicine. On most days we are out the door running to a therapy appointment or a specialist visit by 9:00 am. Right now Avalon has outpatient physical therapy twice a week, speech and occupational therapy twice a week, plus water therapy and feeding therapy weekly. Avalon also has in-home sessions that include physical therapy and vision therapy. I try to schedule most of Avalon’s appointments in the morning. When we come home, Avalon has downtime and lunch. Then she spends time in her stander or gait trainer. Avalon bears weight through her legs really well, so we are working on increasing her core strength. On a good day, afternoons are spent napping and playing. We practice supported sitting, standing, and taking steps in her gait trainer. Avalon also loves playing with switch-adapted toys and cause-and-effect toys, especially ones that light up and make noise. If the weather is nice, we go outside to swing or go for a walk in her stroller. Then it’s dinner, more meds, and time for bed.

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MTEAM: You’ve shared some beautiful photos of Avalon with her big sis Verona! How old is Verona? Can you tell us a bit about their relationship, what they enjoy doing together, and how Verona has taken to the role of big sister?
EH:
Verona is 7-years-old, and she is basically the coolest person I’ve ever met. Verona is incredibly empathetic and wise beyond her years. She is very patient with Avalon, who on her good days can be fussy and irritable, which is also a part of having FOXG1 Syndrome. And on her bad days, Avalon can scream and cry a lot. It can be overwhelming, especially when Avalon is having a reflux flare-up or constipation. However, Verona takes everything in stride. She sings and reads to Avalon, and is always trying to cheer her up. Verona is an excellent helper, and her positivity and upbeat personality encourage me to do better. Avalon ADORES Verona. Hands down. Avalon lights up whenever Verona is around. It’s so awesome to witness. Avalon and Verona love playing in the bath together or snuggling together in Verona’s bed. Verona enjoys scooting Avalon around the living room in her stander or gait trainer. And now that Avalon is using her iPad for AAC (alternative and augmentative communication), Verona is finding new ways to interact with Avalon through cause-and-effect games and switch-based apps. Verona has developed a keen interest in understanding how the brain works and how FOXG1 Syndrome affects the way Avalon moves and functions. She wants to help Avalon with physical and occupational therapy at home, and she intuitively comes up with creative ways to motivate her.

 
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MTEAM: How did you approach talking to Verona about FOXG1 and what having a sister with special needs would mean for your family? Any advice for other parents who are about to talk to their own children about a younger sibling who is born with special needs?
EH:
Avalon didn’t get her FOXG1 Syndrome diagnosis until September 2018 when she was 17-months-old. Before we had a diagnosis, Verona could see firsthand that Avalon was unique as her constitution revealed itself over time. Verona doesn’t have other siblings to compare Avalon to, so she sees and values Avalon just the way she is and rolls with all her ups and downs. I think the hardest part has been helping Verona to understand Avalon’s seizures. Verona has woken up in the morning to the sound of fire trucks and ambulances and paramedics descending upon our house to help Avalon because she’s had a bunch of seizures. Avalon’s seizures first started happening when she was 14-months-old, and it was scary for everyone, especially because I would have to leave with Avalon in an ambulance and sometimes not return home for several days. We have always welcomed Verona to ask us any questions she might have about Avalon, and we also encourage her to feel all of her feelings about having a medically complex, disabled sibling – including feelings of anger or resentment or disappointment. It’s not easy having a sibling who requires an extraordinary amount of time and attention, and we always try to acknowledge that with Verona.

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MTEAM: What have been some of your biggest challenges you’ve faced along your journey with Avalon so far?
EH:
Avalon’s epilepsy is definitely a big challenge, because we have zero predictability for when her seizures might happen. The longest we have gone so far between breakthrough seizures is five months. We are still trying to determine what, if anything, triggers them. I wish we could stop her seizures at home, but so far when Avalon has seizures it requires hospitalization to get them under control. Case in point – Avalon woke up on the morning of Verona’s 7th birthday party day and started having intense breakthrough seizures. Avalon and I ended up missing Verona’s party because we had to transfer by ambulance to Boston Children’s Hospital. Our other biggest challenge is keeping Avalon’s reflux and digestive issues in check. She struggles with gastric motility because having low muscle tone also affects her intestines. When Avalon is constipated or having a bad reflux episode, she is 100% miserable. It makes feeding Avalon more difficult because she doesn’t want to eat or drink. It is stressful and frustrating and heartbreaking because we all just want Avalon to feel better fast.

 
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MTEAM: What do you love about being Avalon’s mom?
EH:
Somehow it makes total sense to me that Avalon is part of my world and I am her mom. Instead of thinking “why me?” when we first began realizing that Avalon was not typical, my thought was “why not me?”. I am honored to be on this journey with Avalon. She is pure love. Because I am Avalon’s voice right now, I am learning how to speak up, ask for help, and advocate for what she needs. Avalon has taught me that I have so much more strength and resilience than I ever thought I had. I’ve also learned that I have an uncanny ability to stay calm in a crisis and think fast on my feet. As a family, we discuss how things don’t always work out exactly how we planned and that life is definitely not always fair. But we also emphasize gratitude and growth and appreciating the little things. There is beauty and wonder and grace in every situation, good or bad.

 
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MTEAM: What key changes do you think would make this a more inclusive world for Avalon?
EH:
I get pretty fired up talking about how inclusion is not possible without confronting access and ableism. Avalon and all the disabled kiddos out there deserve access to equipment and supports so that they can fully participate in day-to-day life. This might mean adaptive equipment like a medical stroller or wheelchair, an indoor seating system for feeding and play, a stander, gait trainer, bath seat, etc. It also might mean communication and vision equipment like speech output devices and iPad apps, switches, and more. It might mean home and vehicle modifications. And our kiddos need access to this equipment in a timely, affordable manner. There is much work to be done in the world to make this a reality. The same is also true for therapies and services, not only in early childhood, but also throughout the school years and into adulthood. Avalon is always going to need adaptive equipment and supports so that she can live her best life. And that is ok. Access is opportunity. Access is freedom.

In terms of the big picture, in order for this world to be more inclusive, we need to confront and combat ableism in our communities. Ableism is a form of prejudice that treats people with disabilities as inferior or less. Avalon is not a misfortune or a burden or someone to pity. She is exactly who she is supposed to be and deserves to exist and thrive just as much as an able-bodied person. Playgrounds should be adaptive. Changing tables in restrooms should exist for all ages, not just babies. Airplanes should have accommodations for wheelchair users. The list goes on and on. I want to be an active participant in helping to change how we see and perceive disabilities and differences because we all belong.

 
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MTEAM: What’s one thing you’d like the world to know about Avalon or for Avalon to know about the world?
EH:
I want the world to know that there are over 1 billion people on the planet living with disabilities. Avalon is in good company. She has just as much to teach me, as I have to teach her. She does things in her own way, in her own time. Avalon is fully human, and every life has value. And I want both Avalon and Verona to know that they are worthy and whole and loved just the way they are.

Give Erin and her family a follow over on Instagram at @GardensofPlenty!

Candyce CarragherComment
Best Buddies Challenge: 10 Autumn Training Tips

The sweltering days of summer are behind us, and for many reasons, that’s good news for anyone like us who is training for the Best Buddies Challenge. Whether you’re cycling or running in May 2020, the autumn months are a wonderful time to get outside and embrace the crisp mornings and beautiful scenery as the leaves start to turn. Below are some tips for training that are specifically applicable to the cooler months ahead.

 
10 Autumn Training Tips for Cyclists and Runners
 

1. WATERPROOF YOUR RIDE/RUN. These are often rainy months, so use or invest in some rain gear that will keep you dry on your ride or run. There are breathable jackets designed specifically for this purpose. Arc’teryx, Endura, MEC, Novara, Showers Pass, Mission Workshop, 02 Cycling Rainwear, Patagonia, and Visijax are a few brands that make jackets specifically built for cycling. Remember to keep your feet dry too, especially if you’re running!

2. BE AWARE OF SLICK SURFACES. Falling leaves can make for slippery surfaces, especially on the rainy days, so take care and keep your eye on the road or sidewalks. If you’re cycling, avoid accelerating, braking or making any sudden turns on wet leaves. Consider changing to all-season tires. If you’re a runner, try to head out on surfaces that have more grip under your feet, like trails. They’re an amazing place to take in the colorful views and the unmistakable scents of the season too. You can also invest in running shoes that soles built for have a better grip.

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3. WEAR LAYERS. The weather this time of year can be unpredictable, but there’s a Scandinavian expression that "there is no such thing as bad weather, just the wrong clothing". It might be freezing cold if you go out early morning, and quickly turn sunny a few hours later. Be smart and layer up so you can remove any unnecessary clothing along the way that you may have needed when you started out. Even if it’s not raining, you may want to consider a light, windproof jacket.

4. MAKE YOURSELF VISIBLE. The hours of daylight start to dwindle on both ends of the day more noticeably now, so if you’re running or cycling to or from work, before you start your day, or after dinner, you’re likely to need some hi-viz colors and reflectors or lights to stay safe. Some fitness gear has these built right in, which makes it much easier to remember.

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5. WEAR GLOVES. This is especially true for cyclists. The whipping wind can numb your hands easily with your speed and positioning. Leather, merino wool, and quick-drying neoprene are all great options. You’ll thank us later.

6. JOIN A GROUP RIDE. If you’re in the Boston area, know that Best Buddies just launched a weekly Friday ride that starts and ends at the Boston Seaport for those of us participating in the Hyannis Port Best Buddies Challenge. They’ve also lined up some great rides on Columbus Day and Veteran's Day. Check out their ride schedule for details and to RSVP.

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7. CHANGE YOUR ROUTE. An ordinary place can become magical when the canopy of trees above your head turns the colors of fire. Change your route often and use your run or ride to do some good oled New England leaf peeping. Different scenery helps us stay motivated and enthusiastic about training, and you might even decide to snap a few photos along the way while you have a well-deserved rest.

8. KEEP IT CLEAN. This one is more for cyclists; the grit and grime that comes with cycling on a wet road can get caught up in your chain and cause unnecessary damage to your bike that could see you visiting the repair shop if you don’t take care to keep it clean. Make sure you have mud guards in place as well, to keep yourself clean on your ride.

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9. LOOK OUT FOR OBSTACLES. Along with leaves, the windy autumn weather can scatter many other natural obstacles in your pathway, from walnuts, chestnuts, and acorns to sticks and bigger branches. The fallen nuts can hurt to step on when you run, and sticks are also a tripping hazard. They can get caught up in your spokes if you’re cycling, so keep a lookout on tree-lined roads, especially in the dimmer light.

10. STAY HYDRATED. Remembering to drink plenty of water before, during, and after your training session is much easier with the hot summer sun beating down on our backs, but it’s just as important when it’s not.

We’d love to hear any additional autumn training tips you might have. Share them with us on social media at @themteamcares. You’ll find us on Instagram, Facebook, Twitter, Pinterest, LinkedIn, and YouTube.

Happy training!

Candyce CarragherComment
10 Minutes With: Elizabeth Edgar

Meet Elizabeth Edgar, mom to two children and just about to celebrate 12 years with her partner. Elizabeth lost her hearing as a young child and her partner was born Deaf. Both of their children are hearing. Below, as we are in the middle of the International Week of the Deaf, Elizabeth talks about what motherhood is like through her eyes, how parents can teach their children to develop an inclusive mindset toward the Deaf and Hard of Hearing community, and a few tips for interacting with and developing friendships with people who are deaf when you yourself are hearing.

 
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MTEAM: Tell us a bit about yourself and your family.
ELIZABETH EDGAR:
My family and I live in Sarasota, FL, about 45 minutes south of Tampa! My daughter, Coral, is 6-years-old and my son, Ocean is almost 2-years-old! We LOVE going on new adventures around Florida. We enjoy being outdoors (swimming, going to the beach, biking, hiking, going to natural parks, etc). If the weather is not cooperating, we enjoy playing, reading books, playing board games, doing crafts together, watching movies, building LEGOs and play hide and seek (the kids’ absolute favorite!).

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MTEAM: You have a blog called Mommy Gone Tropical with the subtitle “Deaf Mom Exploring Life Visually”. Can you talk a bit about the goal of your blog, what you hope to accomplish or communicate through sharing your stories?
EE:
My goal for the blog is to spread awareness about Deafness and sign language, mainly through my eyes: my opinions, experiences, and what I’ve learned from others in the Deaf community. While doing so, I share my experiences with motherhood, with my family and our journey through my eyes. I am hoping to reach more people, especially people who are around or will be around Deaf people, so they will go in with an inclusive mindset. Also, to reframe people’s stereotypical thoughts about the Deaf community, like we can’t have successful lives, we are broken and dumb, or we all have to have cochlear implants to be cured. All of these are not true.

 
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MTEAM: Your children are both hearing. How and when did they each come to understand your hearing differences and what was that moment like for each of you?
EE:
My daughter, Coral, didn’t really realize that her parents were Deaf until probably when she was 4-years-old. Our life is her normal, so she doesn’t know of another way of life. Once she started preschool, she realized that other kids couldn’t sign and their parents couldn’t either. She started preschool strictly signing because it was what she was comfortable with. There were tiny moments when she was younger that made her pause, like yelling behind me and I didn’t turn around. My son, Sawyer doesn’t really know yet. He knows he has to tap on our shoulders, communicate with us via ASL, and things like that but he still yells for us.

 
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MTEAM: Is your partner deaf or hearing, and how did you meet?
EE:
My partner is Deaf, too! He was born Deaf to a Deaf family while I was born hearing to a hearing family. We met when I was 18 and he was 19, at Gallaudet University in Washington, DC. Can’t believe that this October 1st will be our 12 year anniversary! He was from New Jersey and I was born and raised in Arizona. We moved to Florida about 8 years ago to start our life together. It has been a grand adventure so far with our kids!

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MTEAM: What are two of the most common questions you’re asked related to the crossroads of motherhood and being deaf, and how do you answer them?
EE:
One question I get all the time is, “How do you hear your baby cry?” Eventually, I decided to write a blog post about this so if people decide to search online, they will have their questions answered right away. Back to the point, I will tell them we have vibrating alerts, flashing lights, bed-share, mirrors, and simply using our EYES. The sound of crying is not the only way to know if a baby is crying or not because it is also visible (face turning red and tears). I’ve also included in the post how people knew when their babies cried at nighttime back in the old days.

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Another question is, “So, you don’t talk? Well… how can your kids learn to talk?” We live in a hearing world full of noises, people talking, TV sounds, music, etc. They are constantly exposed to spoken languages. They are also around our hearing family and friends. Now my kids are bilingual in English and ASL.

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MTEAM: What are one or two of your memories from your own childhood that were moments you may have felt the challenges of living without sound?
EE:
I remember one memory from when I was maybe 10-years-old. I went for a bike ride with a Deaf friend on the way to her community swimming pool. She was ahead of me when I fell off my bike. I tried to get her attention by waving, but she never looked behind. She continued biking, turned a corner and disappeared from my view. It was one of the moments when I thought, “I wish my friend could hear then I would’ve caught her attention right away.” Instead, I got up, gathered my swimming stuff and got back on the bike. I rode for a bit when my friend reappeared to see what happened to me.

 
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MTEAM: How do all parents, deaf or hearing, teach their children to grow up with an inclusive mindset toward those who are deaf or hard of hearing?
EE:
I’ve actually written a post about this - teaching children how to be inclusive and embrace diversity. This is really important and is something that ALL parents should teach, because no two persons are the same. Everyone has something to offer. One common thing I’ve experienced many times is kids staring at me. I am fine with that, but I don’t like their parents’ reactions to their kids staring. I’d encourage them to ask their kids about why are they staring at me and take this opportunity to create a learning experience. If you tell your kids to look away, it is teaching them that being different is bad. The short version of the blog post linked up above is: accepting Deaf or hard of hearing people’s differences really starts with the parents. If they show their kids that they are embracing the differences, the children would, too. Allow them to ask questions even if it is uncomfortable. If you don’t know how to answer their questions about Deafness, go find the answer together. Do activities together like watching a movie about Deaf children, ASL music videos, go to events where you know Deaf/HoH people will be, buy from Deaf-owned businesses, etc.

 
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MTEAM: Do you have any tips for hearing people (beyond learning sign language) for building a friendship with someone (say, for example, a mother of a child’s classmate) who is deaf?
EE:
Yes! I’ve actually wrote a post about how to interact with Deaf moms but really the post applies to any Deaf person. Basically, make sure to maintain eye contact while you both are conversing. Avoid making treatment suggestions like, “You should get those cochlear implants or you should do speech therapy.” We’ve heard it all constantly so we know which methods are best for ourselves. Encourage your children to play with his/her children. Ask to exchange numbers or to be friends on social media so you all could get together. If you know a little bit of sign language, don’t be nervous to show it off!

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MTEAM: What would make this world a more inclusive place for people who are deaf or hard of hearing?
EE:
Simply put, make everything accessible to Deaf people. We deserve the same treatment hearing people get. Captions/subtitles on everything and everywhere. Provide an interpreter and/or other methods immediately when requested. Have the ability to order at a drive thru like a touchscreen menu, Recognize and accept the Deaf community’s culture, history and language. Appreciate and respect ASL, not appropriate it for your own benefits. Do more with your part as an ally for Deaf people . Also, spread the word and share anything that would reframe the Deaf community like heartwarming videos and/or stories of successful Deaf people or our rich history, culture, language and community. Follow me on Facebook because I share a lot of this and also I do ASL storytelling videos with my kids!

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Connect with Elizabeth on social media:
YouTube
Facebook
Instagram
Pinterest

Candyce CarragherComment
Deaf Awareness Month: 25 Instagrammers to Follow

September is deaf awareness month, so we thought we’d share a mix of people who are either deaf or hard of hearing themselves, or in many cases, parents of children who are deaf or hard of hearing, to follow on Instagram. There, they share their journeys, their experiences learning sign language, and the joy of seeing their children communicate. There are many more that are not on this list, so if we’ve missed any that you’d highly recommend, send us a DM at @themteamcares and we’ll add them!

 
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@sign_and_see

Two moms, Lana and Meag, with hard of hearing / deaf kids who came together to share their passion for learning sign language to communicate with their children. 

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@signingwitht

4-year-old T tells stories, sharing her ASL journey. 

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@melissahyder

Melissa Hyder is a mother of three, sharing her family’s journey with hearing loss. She’s also a school counselor. 

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@elsonhq

Hannah is a cochlear implant mom spreading deaf awareness in the UK. Henry was born profoundly deaf and has cochlear implants.

@court.lebeau

Courtney Lebeau is an aspiring photographer and mom to two children, Scarlett who is hearing, and Bradley who has hearing loss. 

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@daddys_deaf_boy

James Knott shares his family’s journey with their son Nelson who is deaf and has cochlear implants. 

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@courtney.scholl

Courtney is a mom to two, Finley and her brother Judd who was born with CHARGE Syndrome as well as severe and profound hearing loss.

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@hearforemma

Lindsey is mom to Ava and Emma and is a cochlear implant parent and advocate in Chicago. 

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@ivyalonasjourney

9-year-old Ivy identities as “Deaf Youth Trans” and is bringing intersectional activism into the deaf and trans communities for both deaf awareness and trans awareness. 

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@signedwithheart

Ashley Clark Fry endeavours to teach ASL thrift social media.

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@sheenamcfeely

Sheena McFeely is a deaf author, creator, motivational speaker and mom to Shaylee (who is also deaf) and Ivy (who is hearing). She founded and hosted the first ever awards ceremony “The Pearls” honoring deaf women across America. She also has amazing YouTube channel called ASL Nook.

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@whyisign

Stacy Abrams connects hearing families with the deaf and signing communities. 

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@signing_time

This is the Instagram of the educational TV show Signing Time. 

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@aslmeredith

Meredith teaches American Sign Language on her channel, with receptive practice in her stories and popular “fingerspelling Friday” challenges. 

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@hopeandsensibility

Katie Hope is mama to Odin and a lover of ASL, and advocate for the deaf and hard of hearing community. 

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@trayce_stoenescu

Trayce Stoenescu is mom to Bear and Mila who are both part of the deaf and hard of hearing community. She talks shares their journey with ASL and cochlear implants and life in general. 

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@mybattlecall

Valli is a mother of two teenagers who were both born with hearing loss and have cochlear implants. She’s a hearing loss advocate and writer. 

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@_morgansnook

Morgan Snook is a writer and mama to two girls. Her youngest was born with mild-to-moderately severe bilateral sensorineural hearing loss. 

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@skistef

Stef is mom to baby Helena and her older brother Theo who was born with hearing loss.

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@amyferrell17

Amy Ferrell is mom to two children, a hearing little boy Logan and a deaf little girl Charlee who has cochlear implants. 

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@momthatsigns

Erica is mom to two daughters, one hearing and one severely deaf. She’s studying ASL and interpretation and embracing the differences that deafness brings.

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@elizabeths_cmv_journey

Vanessa shares her daughter Elizabeth Grace’s life after being diagnosed with Congenital CMV.

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@signingmomof2

A mom of two, the oldest Cason, who is deaf and the youngest Corbin, who is hearing, an advocate for the deaf and hard of hearing community, and lover of ASL. 

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@emmafayerudkin

EmmaFaye is deaf. She shares her adventures with her hearing dog Hank. She’s a “Hearing Aid Fairy” at @aidthesilent, was Miss Antonio 2015 and 2017, and is on the Governor’s Committee on People with Disabilities.

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@aslsoundofmusic

Megg Rose is a deaf performing artist whose songs are in sign language.

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Candyce CarragherComment
10 Minutes with: April Mullen

Meet April, mom to Kian, his brother Luke, and a second brother on the way! Kian, like Meredith—the “M” in our MTeam—was born with FOXG1, and is one of only two people in Ireland diagnosed with this rare neurodevelopmental disorder. Below, April shares some of the challenges Kian struggles with every day, but also the many joys in his life, the happiness he spreads to others, and why her and her husband Rob are proud of Kian each and every day. She also talks about one of the key changes that would make the world a more inclusive place for Kian (not to mention many, many other families).

 
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MTEAM: Tell us a bit about yourself and your family
APRIL MULLEN:
Hello, my name is April Mullen. I was born and raised in Cobh, Co. Cork, Ireland. I have lived here all my life. I have two beautiful boys: Kian (5) and Luke (4). I am currently 30 weeks pregnant with our third child, another boy!! I’m completely outnumbered in my house, but that’s ok; boys love their mommies!!! My husband’s name is Rob and we live a pretty normal life, for the most part.

 
Kian Mullen - FOXG1
 

MTEAM: Your son Kian was born with FOXG1. Can you explain what that means to anyone who is hearing of this for the first time? How has it manifested itself in Kian’s life specifically.
AM:
For those who aren’t aware of Foxg1, it is a neurodevelopmental disorder caused by a mutation/deletion of the foxg1 gene. The loss/mutation of this gene impacts the brain’s development and function. The condition can present with seizures, inability to control body movement, and lack of speech to name a few.  Many children cannot walk or talk and struggle with everyday life.

For Kian, foxg1 means he cannot walk or talk and is tube fed. He needs 24/7 care. He can sit with assistance and can walk in a rifton walker, which he is strapped into. This gives him a lot of independence.

 
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MTEAM: Tell us more about Kian! (How old is he? What does he love most? What makes him happy? What makes him uniquely Kian?)
AM:
Kian was born on 21st February 2014 after a 25 hour labour. He was our first child and so everything was new and exciting. Kian passed all his newborn checks and we took him home excited, yet a little daunted, by what lay ahead. From the get-go, things didn’t go smoothly. Kian cried a lot and his sleeping was horrendous.  For the first five months of his life it was a complete guessing game. We went to our doctor and reflux was diagnosed, but even with medication things still didn’t improve. He was very tight and floppy ,and eventually Kain was diagnosed at six months with Foxg1.

Kian is a very happy child now. This is one the main characteristics of foxg1; our children have the brightest, biggest smiles. Kian absolutely loves music, whether he is listening to it, I’m singing to him, or he is playing with a musical toy. His face completely lights up and it’s such a joy to see him so happy. Kian just loves life in general. He is a very happy child, as I’ve mentioned, and gives everything a 100%. He adores his granddad and they can sit and chat for hours. 

 
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MTEAM: What is a typical day in Kian’s life like?
AM:
A typical day in our life can vary, but for the most part we are like any other family. We get up have breakfast and start the day. My youngest Luke is in preschool and Kian just started Junior Infants in a special needs school. There are days when we have appointments with Kian, such as an eye specialist or therapies.  We are just like any other family, but instead of taking Kian to after school sports, etc, we attend doctor appointments or physical therapy.

 
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MTEAM: What have been some of the biggest challenges you’ve faced along your journey with Kian so far?
AM:
The biggest challenge both myself and my husband face is the unknown. We don’t know what the future holds for Kian and that is a scary thing. It is very hard to watch your child struggle with everyday life and not have a miracle cure to solve all his adversities. Because foxg1 is so rare (there are only 486 diagnosed cases in the world and Kian is only 1 of 2 cases in Ireland), life can be daunting. The other major challenge we find hard is the fact that Kian is non-verbal. When he is unwell, it’s a complete guessing game on what potentially is causing him to feel pain/upset.

 
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MTEAM: Share a memory of one of the times you’ve been especially proud of Kian.
AM:
I don’t have one particular proud moment as both myself and Rob as parents are extremely proud of Kian all the time and the way in which he just gives life 100%, the way he tries his best to interact with people, and the way he lights up a room with his smile and just draws everyone to him. Anyone who meets Kian is immediately impacted by him and just melts.

 
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MTEAM: What sort of advice would you give to parents who are finding out about a FOXG1 diagnosis for the first time?
AM:
Finding out that your child has foxg1, or any disability, is a complete shock to the system. You have a pre-designed life planned for your child, and when this is thrown into chaos with a diagnosis. This can be very hard to deal with. I would advise any new parent whose child is diagnosed with foxg1 to cry, mourn the life you had designed for your child, and find a way forward. Take every day as it comes and trust your gut. A mother’s intuition is never wrong in my eyes and it has served me well so far. Video tape anything that you think is out of the ordinary and reach out to other parents/families of children with the condition as their knowledge is second to none.

 
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MTEAM: What would you say to anyone who has an opportunity to meet someone with FOXG1 (or others with different abilities) for the first time but feels a lack of confidence about how to interact with that person?
AM:
Well, from my experience of people meeting Kian for the first time, they generally treat him like any other child. I think I’m more nervous as you feel you need to explain everything, like the fact that he is non-verbal, or it may take him sometime to look at you, etc. People tend to get down to his level and talk to him like he’s a normal human being. So I suppose my advice would be not to treat them any differently and don’t be afraid to ask questions; we won’t be offended.

 
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MTEAM: What’s one thing you’d like to the world to know about Kian?
AM:
The one thing I’d like the world to know about Kian is that even though he has limitations, on the whole he is like any other child, loves cuddles, loves playing with toys, loves music, and loves being around people.  Just like the rest of us, he has his moments were he likes his own space, will act up, and have an attitude.  

 
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MTEAM: What key changes do you think would make this a more inclusive world for Kian?
AM:
What would make this a more inclusive world for Kian—and it may sound simple, but it’s something we struggle with in Ireland—is as simple as having an accessible public bathroom installed everywhere. You can feel very isolated as a special needs parent at times and making it easier to access certain basic needs when you decide to take the leap and venture out would go a long way. Here in Ireland, an accessible toilet is just a toilet with handrails. This unfortunately does not meet Kian’s needs, he is incontinent and always will be, and therefore a changing table (not a baby one) and hoist is the only thing that can accommodate us. I have had to change Kian on a toilet floor and the booth of our car, which is distressing for both of us.

Candyce CarragherComment
Back to School: Meredith Starts 6th Grade

It’s been a while since we checked in with Meredith’s parents for a little update on what she’s been up to, so we’re excited to share the post below from her dad Greg, talking about her summer, a house build that’s completely accessible for Mer, and the start of 6th grade which began last week.

 
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(For those of you just following along or stumbling upon this post, Meredith is the “M” in our MTeam and the reason we came together to support Best Buddies and advocate for individuals with intellectual and developmental disabilities. You can read more about her and her family and her journey with a rare genetic condition called FOXG1 in their interview post).

Over to Greg:

“Meredith had a wonderful Summer filled with visits to the Cape and a very active Summer school program. We also moved into a new handicapped accessible home this past June. The house build was an exciting process and offers all of us many new opportunities. It is a one story home with an open floor plan. There are no bumps or transitions which allows Meredith to roll freely in her wheelchair. We have a front porch Meredith can roll onto without having to negotiate any steps and our new kitchen table has plenty of clearance allowing Meredith, Laura and I to eat together as a family. This is something we have never been able to do before.

 
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Meredith started 6th grade at King Phillip Middle School this week. She goes to school year-round and benefits from this ongoing structured support. Mer studied amusement parks, spent a lot of time outdoors and went swimming each week. The Summer program is a nice break from the intensive Fall and Spring academic curriculum. Meredith continues to impress with the eye gaze and becomes more comfortable with the technology each day. Meredith is also moving into a new classroom this year so we are looking forward to seeing the new digs! 

It is a joy to watch our daughter grow into such an amazing lady and we are blessed and fortunate to be surrounded by so much love and support. 6th grade here we come!”

Candyce CarragherComment
12 Ways to Incorporate Fitness into a Busy Life

Ever catch a glimpse of someone running or cycling by and wish you had the motivation, strength, or dedication to do the same? It takes some work and commitment, but you absolutely can. By May 2020, you could easily be walking, running or cycling in the Best Buddies Challenge with us. Everyone has to start somewhere, and we have plenty of time, even for absolute beginners. Read on for 12 tips.

 
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1.) CHANGE YOUR MINDSET. Before anything else, promise yourself you’ll ditch the excuses. Think about all of the benefits of exercise: improved mood, less anxiety, more energy, weight loss, strong muscles and bones, a boost in your immune system, increased productivity, clearer skin, better memory, better quality of sleep, and so on. You’ve heard it all before, but a reminder of the many positives never hurts when you need a good reason to brush the excuses aside.

2.) START SMALL. If you head out for a 30 minute run after having not exercised for half a year, you’ll likely end up injured or frustrated. Ease yourself in. If you’ve been living a very sedentary life, even a 10-15 minute walk is a worthwhile start. Check in with yourself and your current fitness level and set a goal that’s a slight push without being overwhelming.

 
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3.) FORM A HABIT. Once you’ve made the start, even a small one, the next goal is to turn it into a habit. You’ll read all sorts of statistics on how long it takes to form a habit, but scientifically there really is no magic number. A good estimate may be around two months, but everyone is different. The main point is to find creative ways to motivate yourself through the first few months that will likely be the biggest challenge. 

4.) JUST MOVE. There have been many different studies recently that link long periods of continuous sitting to an early death. You may have heard the phrase “sitting is the new smoking.” Even if you do exercise, the statistics still ring true if you’re then going on to sit for hours at a time. So make sure you get up and move around for five minutes every once in a while, preferably every 30 minutes, even if it’s just stretching or going to refill your water.  

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5.) MAKE SMALL CHANGES. Keep movement on your mind and you’ll find it easier to remember to incorporate it into your day. Take the stairs, hop off the bus or train a stop earlier, park in the furthest parking spot, don’t eat lunch at your desk, do a bit of stretching or jumping jacks every time you wait for the kettle to boil or the coffee to brew, take a phone call while you’re walking instead of sitting at your desk. 

6.) INTEGRATE FITNESS. Look at your day and see where you can make slightly bigger changes that will add up over time toward your fitness goals. Cycle or walk to work if you can; no matter how you get there, you have to go, so may as well spend it doing something good for your body and mind instead of dealing with the stress of traffic and crowded public transportation. If the situation allows for it, consider taking a meeting outdoors and walking while talking rather than sitting in a meeting room. 

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7.) WAKE UP EARLIER. If you regularly hit the snooze button, or even if you don’t, it’s likely you can wake up 15 minutes or even half an hour earlier to go out for a short walk, run, or cycle before work. If you can’t, consider going first thing when you arrive home. There are amazing benefits to starting your day with exercise, but it can also promote relaxation and help you process your day and fall asleep quicker. 

8.) SIGN UP FOR A CLASS. If self motivation isn’t your forte, sign up for a class. Once you’ve paid for it and it’s in your calendar week after week, it’s much harder to skip it. Most classes only run for 30-45 minutes, and you’ll find many gyms, yoga centers, and other fitness facilities do cater to the before and after work crowds with early morning and evening classes.

 
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9.) SPEED UP YOUR CHORES. Turn your everyday chores into workout sessions. If you’re vacuuming, do it with more enthusiasm. If you’re going to the post office, walk, run, or cycle instead of drive. If you’re going to the corner store to pick up milk, do the same. If you’re cooking, do a few calf raises while the water boils. Washing windows? Do it with gusto!

10.) WEAR A FITNESS TRACKER. Psychologically, a fitness tracker can be a great motivator. You’re not competing against anyone else (unless you’re posting progress on social media), but you’re seeing your own progress. Even a basic pedometer can make a difference to your mindset, and you can get fitness trackers that will show you everything from calories burned to distance traveled to heart rate and sleep. There are also apps for fitness that are especially useful for beginners.

 
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11.) HAVE AN ACCOUNTABILITY BUDDY. If you have a friend who is also looking for motivation to incorporate fitness into a busy life, team up and hold each other accountable with daily texts or calls or, if you can, run or cycle together. It’s easier to change your own behavior when you have the ripple effect. Be sure to celebrate your small and big wins together along the way. 

12.) MAKE A COMMITMENT. Whether it’s joining the MTeam to participate in the Best Buddies Challenge in May 2020—cycling 20, 50 or 100 miles or running or walking 5k—or signing up to another big event, having a set goal and a deadline will be an effective way to motivate yourself to move more. 

Candyce CarragherComment
A Best Buddies Story: Mikayla Holmgren

Meet Mikayla Holmgren, an inspiring young woman who is showing the world that a Down Syndrome diagnosis won’t stop her from chasing her dreams and who is inspiring others to do the same. Mikayla is a Best Buddies Ambassador, Board Member, and Champion. She was the first woman with Down Syndrome to run in the state Miss USA pageant. She won the 2019 MN Miss Amazing award. She’s been a guest on The Jason Show three times. She’s also spoken at the United Nations in New York City.

Below, she talks about all of these things as well as her passion for dance, some of her favorite experiences from Best Buddies conferences and her excitement about being involved in setting up a Best Buddies office in her home state of Minnesota.

 
A Best Buddies Story - Mikayla Holmgren
 

MTEAM: Tell us a little bit about yourself.
MIKAYLA HOLMGREN:
My Name is Mikayla and I live in Minnesota on a lake with my mom and dad. My life is so full. I have many passions. My biggest passion is dance. I have danced since I was six. I have been involved in dance troupes, Pom and Cheer Squads. I enjoy dancing jazz, ballet, lyrical, hip hop and pointe. I have, and still do, compete at dance competitions. I choreograph my own solos. I have won numerous awards.

My other passion is art. I enjoy drawing, painting and photography.

I am involved in the Special Olympics. I am a gold medalist for Gymnastics level 3. I also play unified golf with my dad. Sometimes we get gold. Sometimes we get bronze. But we always have fun. This is my time to spend with dad.

I am a college graduate. I graduated from Bethel University’s BUILD program in 2018. I was able to learn life skills and independence. I worked toward getting a certificate in education. I was on their dance team and in choir.

A Best Buddies Story - Mikayla Holmgren

MTEAM: You’re an Ambassador, Board Member and a Champion for Best Buddies! How long have you been doing each of these roles and what do they entail?
MH:
I became an Ambassador for Best Buddies two years ago. I was running at the Miss Minnesota USA pageant and was looking for a platform. I heard about Best Buddies through the TV series “Born This Way”. When we called the Best Buddies office, they immediately got me involved. Last year, I became a Board Member and Champion as we worked towards opening an office in Minnesota. (We do not have an office yet, but hope to open one in January of 2020).

As a Ambassador, I learn to be a self-advocate and to be a voice in sharing about inclusion. As a Board Member, I get to give input as to what we want for our Minnesota chapter. As a Champion, I am chosen to help raise funds to open the state office. I get to hold mini fundraisers and collect donations online. I raised $13,000 last year and I hope to raise $15,000 this year.

 
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MTEAM: What value has Best Buddies brought to your own life?
MH:
Being a part of Best Buddies has brought me lots of new friends. I enjoy going to conferences every year. This year, my roommate Brittani was involved in pageants and gymnastics. We became friends instantly. She was my Buddy for the weekend. I wish she lived closer to me.

I am also able to go through Ambassador training, in which they help us write speeches and teach us to be self-advocates.

 
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MTEAM: What are some of the coolest things you’ve been able to do through your involvement with Best Buddies?
MH:
Being a part of Best Buddies, I’ve done so much.

At Conferences, I have spoken and danced, been part of the opening and closing ceremonies, the fashion shows, and a panel for students to ask us questions.

I was Co-Emcee at last year’s Minnesota Champion of the Year Gala alongside Christina Palladino from FOX9.

I shared the stage with Anthony Shrivers’ two daughters, Eunice and Francesca, as he explained that he would love to see the same opportunities for me, and all of those with Intellectual disabilities, as his daughters get to have.

I have met some incredible people, including, several members of Born This Way (Megan, Steven, JT, Kalie), actress Lauren Potter, and a Bachelor named Connor!

 
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MTEAM: Do you have a favorite memory from any of the past Best Buddies events you’ve attended?
MH:
My favorite and very touching memory of Best Buddies was at last year’s conference. I was asked to choreograph and dance to a choir of Best Buddies singing “A Million Dreams”. This performance was dedicated to the Best Buddies Parkland High students who were killed. It was very moving and everyone cried.

 
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MTEAM: Has your involvement with Best Buddies in any way influenced your career plans for the future?
MH:
Being a part of Best Buddies has made me more outspoken. I will work with children to be able to show them what inclusion looks like. I would love to have my own dance studio someday and to show that those with IDDs can have their own businesses.

 
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MTEAM: Are you partnered with a buddy of your own at the moment?
MH:
I am not currently partnered with a buddy. We are still on the ground level getting our office up and running in our state. But once it is up and running, I will be paired with someone. I can’t wait. I hope it is someone like my friend, Brittani from the conference!

 
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MTEAM: Who is someone you’ve met, through your advocacy for people who have intellectual and developmental disabilities, who really inspires you and why?
MH:
I would say Megan Bomgaars, from Born This Way. We met two years ago at the Best Buddies conference. I had watched her show and was excited when I got to meet her. I loved how she can get in front of people and talk as a self advocate and tell them not to limit her and those with IDDs. I love that she started her own business “Megology”. She is an amazing lady. Over the past two years, we have become good friends. We FaceTime. She inspires me to be my best and to go after my dreams.

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MTEAM: You were the first woman with Down syndrome to run in the state Miss USA pageant. You won 2019 MN Miss Amazing. You were a guest on The Jason Show. How you hope to inspire and empower others through these experiences and others like them?
MH:
When I signed up for the Pageant, I did not know that it was “THE PAGEANT” . I just wanted to do it. When I realized what pageant it was and that I was going to be the first woman with Down Syndrome to run, I wanted to inspire others. The morning of the pageant, I text my mom that “I was going to be awareness for those with special needs”. I want to show the world that we are capable of doing so much.

As Minnesota Miss Amazing, I can use it as a platform to talk to groups about inclusion and what that means.

I have been on the Jason Show three times. Again, it is to show what we are able to achieve. Jason is so fun, and I hope to be on again.

I have had so many people tell me that they were inspired to do something because of seeing me on stage, in the pageant or on the Jason show. That is what I want. To inspire people go after their own dreams.

 
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MTEAM: You spoke at a women’s conference at the United Nations on Saving Down Syndrome. What was that experience like?
MH:
It was so cool to be at the United Nations and in New York City. It is some place that I never thought I would see. I met women from all over the world who wanted to take a photo with me.

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MTEAM: Can you tell us briefly some of the points you made in your speech at the UN?
MH:
When I speak, I tell about how the doctors did not believe that I would be able to walk or talk because of medical issues from me being premature and because I had lost oxygen. I believe that I am here to share my story and to show that those with Down Syndrome can reach for the stars and achieve. I tell people to look past the disability and see the ability.

 
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MTEAM: What are the key things that would make this world a more inclusive place for people who have Down Syndrome?
MH:
We need to teach and train others what Down Syndrome is like. We need to train employers. We need to train students. We need people to not be afraid to reach out to be a friend. Mostly it takes kindness. Just be kind to everyone.

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Candyce CarragherComment
10 Facts about Best Buddies International

How much do you know about Best Buddies International, the organization that the MTeam supports through fundraising and our annual participation in the Best Buddies Challenge? One of our top tips for MTeamers is to educate yourself on the cause your fundraising supports, so you can speak confidently when requesting donations. (For example, do you know where the money goes? If not, definitely head back to that post to read a detailed breakdown.)

 
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Below, we’ve rounded up 10 fun facts about Best Buddies. How many did you already know?

1.) ANTHONY KENNEDY SHRIVER FOUNDED THE FIRST BEST BUDDIES CHAPTER IN 1987. The first chapter was established at Georgetown University, which is still the biggest in the Washington, D.C. area. There was an article published in the Hoya newspaper which is still available to read here. 50 students were already paired with Buddies and Shriver is quoted saying, “The whole concept is more a socialization program. We want to get these kids out of their own little worlds and into the wider world.”

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2.) IN 2019, THERE’S A BEST BUDDIES CHAPTER ON 1,500 COLLEGE, HIGH SCHOOL, AND MIDDLE SCHOOL CAMPUSES. Anyone can start a chapter at their school with administration approval, student leaders with and without disabilities and a teacher who will be the chapter advisor, and a meeting time and place that works. Best Buddies University explains exactly how to set everything up, and leaders can then attend the annual Best Buddies Leadership Conference in Indiana where they are invited to network, engage and learn best practices.

3.) BEST BUDDIES HAS 2,900 CHAPTERS TOTAL, IN ALL 50 STATES AND A TOTAL OF 54 COUNTRIES SPANNING 6 CONTINENTS. There are a total of 125,150 people who currently participate in these chapters. New Zealand is the latest country currently under development, which will soon join the list. A selection of other places around the world that now have chapters include Tanzania, Uganda, Macao, Mongolia, Vietnam, Bulgaria, Greece, Turkey, Colombia, Cuba, Haiti, Lebanon, and Qatar, among many, many others.

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4.) BEST BUDDIES HAS CLOSE TO 30 CELEBRITY AMBASSADORS. You may recognize a few of the names. Of course there’s Tom Brady, who has been the closest connection with the MTeam, especially Meredith, who he adores. Others include musicians Steve Aiko and Kenny G; NBA players Kyrie Irving, Chris Bosh, and Mario Chalmers; actors Rob Lowe, Pierce Brosnan, and Ron Howard; supermodel Cindy Crawford; actresses Elle Fanning and Marlee Matlin; Olympian Carl Lewis; and NFL player Emmitt Smith to name a few.

5.) THE ICONIC BEST BUDDIES LOGO WAS DONATED TO THE ORGANIZATION IN THE LATE 1980S, FROM LEGENDARY POP ARTIST KEITH HARING. The logo that Keith Haring created represents one-to-one affection and acceptance. Anthony Shriver met Keith Haring in his studio in New York City in the late 1980s: “He didn’t know me from a hole-in-the-wall, but he had a family member with special needs and understood the significance of the Best Buddies mission. He knew what a friend meant in his life and his family member’s life. He immediately told me he wanted to help and asked if he could donate our logo. The rest is history—and a form of magic.”

10 Facts about Best Buddies International

6.) IN 1993, THE BEST BUDDIES FINE ART COLLECTION WAS DEVELOPED. The original work in the Best Buddies Fine Art Collection included masterpieces by famous artists like Keith Haring, Roy Lichtenstein, and Robert Rauschenberg. They’ve since expanded their collection to include artwork by Julien Schnabel, Jim Dine, William Wegman, Jamie B. Wyeth, Romero Britto, Alain Despert, Helmet Koller, Mark Kostabi, Kenny Scharf, and Hunt Slonem. Best Buddies now partners with ArtSpace where they have prints for sale.

7.) IN 2018, SLIPKNOT DRUMMER JAY WEINBERG HELD A BENEFIT GIG FOR BEST BUDDIES, CALLED BUDDIES ON THE BEAT. It involved members of many other bands as well, from The Offspring to Dashboard Confessional. Jay first heard about Best Buddies through a Nashville Predators event. Now he is partnered with a Buddy of his own - Daniel, a 26-year-old IT technician and drummer who has autism. They meet up for dinner to talk about drums, and Jay helped Daniel set up his first official recording session. You can read more here., on Forbes.

 
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8.) BEST BUDDIES HAVE HELPED EMPLOY 1,369 PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES. With 84% of people with intellectual or developmental disabilities unemployed, there’s a very long way to go, but one of Best Buddies’ main missions if to build opportunities for integrated employment through their Jobs program. Their role is to match skilled and qualified individuals who have intellectual and developmental disabilities with businesses that are seeking enthusiastic and dedicated employees, and to create and nurture those relationships with the people on both sides of that coin.

9.) IN 2015 A&E NETWORK PARTNERED WITH BEST BUDDIES TO PREMIERE A NEW DOCU-SERIES, BORN THIS WAY. For those who haven’t seen it, Born This Way chronicles the lives of young-adults with Down syndrome, several of whom are Best Buddies participants. Cameras follow them around “as they pursue their passions and lifelong dreams, explore friendships, romantic relationships and work, all while defying society’s expectations.” Shriver hoped it would “demonstrate to society that individuals with intellectual and developmental disabilities are just like everyone else and should be fully included in our communities, our workplaces and our lives.”

10.) BEST BUDDIES HAS FOUR MISSION PILLARS AND NINE FORMAL PROGRAM TYPES. The four mission pillars of Best Buddies drive all of their programs. These are one-to-one friendships, integrated employment, leadership development, and inclusive living. The eight programs that support these mission pillars are: Middle Schools, High Schools, Colleges, Citizens, e-Buddies® , Jobs, Ambassadors, Promoters, and Living (the newest addition). 83% of revenue goes directly to funding the Best Buddies programs, and the rest goes towards administration and fundraising.

Candyce CarragherComment
Best Buddies Challenge: Cycling Tips from Richard Fries, Director of Cycling Experience

Even though it’s not until May 2020, the Best Buddies Challenge is on our mind year round. Some MTeamers cycle 20 miles, some 50 miles, and others ride 100 miles. We keep training, perhaps with less intensity, through the summer, and then amplify our efforts at the end of winter.

We had the opportunity to ask Richard Fries, the Director of Cycling Experience at Best Buddies International, a few questions.

Below, he shares some excellent tips for training in all weathers, tells us about what to expect from the terrain of the 100 mile route, and talks about the gear you’ll need for the ride.

 
Photo: Richard Fries

Photo: Richard Fries

 

MTEAM: How long has the 100 mile ride in the Best Buddies Challenge been running?
RICHARD FRIES:
We just celebrated the 20th anniversary of the Best Buddies Challenge: Hyannis Port. Our 2020 event will be the 21st edition of our organization's single largest fundraiser.

MTeam, Best Buddies Challenge 2019

MTeam, Best Buddies Challenge 2019

MTEAM: Can you describe the course for the 100 mile ride during the Hyannis Port event?
RF:
Experienced cyclists describe our course as relatively flat, as it has no sizable or "categorized" climbs. But beginners are often stunned by how much climbing is on the course. Given the total elevation gain is more than 3,000 feet over 100 miles, the more accurate description is "rolling." Every rider agrees that the toughest climb is at mile 82 on what we call the "Capenberg". After a steady uphill grade of nearly two miles, riders turn left and face a short, steep climb to the highest point of the entire course.

MTeam, Best Buddies Challenge 2019

MTeam, Best Buddies Challenge 2019

MTEAM: Can you recommend a sample training schedule if those who are a bit rusty (or even complete beginners) and want to start getting into shape for the 2020 event now?
RF:
We stress one general principle: 'ride more; train less.' The most important thing is to establish a base of fitness. Think of it as scaffolding, stacking up fitness, month upon month, year upon year. There is no replacement - not spin class, not Peloton, not Zwift, not CrossFit - for long days on the road bike. These summer days are great for weekend tours. The key is to make them enjoyable and interesting. Ditch the car and ride to barbecues, beaches, mountains, lakes, etc. And remember to stop for coffee and ice cream and snacks. Keep it at a talking pace. Coming out of winter, however, we suggest a 12-week plan that can include some gym work, cross training, yoga, and spin classes. The first six weeks are simply building up that base strength. The second six weeks will include some intensity either doing intervals or climbing.

MTeam, Best Buddies Challenge 2019

MTeam, Best Buddies Challenge 2019

MTEAM: What’s your best tip for training on the hot summer days?
RF:
Riding on hot summer days can be fantastic. There are some easy tips to beat the heat, which include riding earlier in the day or closer to the evening, hydrating, altering our diet to include more fruits and vegetables, dressing appropriately, using safe sunscreen (note that one should carefully research the ingredients of sunscreen as the FDA has scrutinized many common ingredients used). Daunting as it may sound, night rides and urban adventures with good lights provide an amazing experience.

But full day rides through the heat of the day can also be improved through one's route selection. Riding at higher elevations will typically offer cooler temperatures. Another trick is to seek roads with tree cover. Better yet, consider riding the emerging network of rail trails and abandoned rail beds, which are always in the shade. Some of these paths, such as the Cape Cod Rail Trail, run longer than 20 miles in distance. Others, such as the Bruce Freeman Rail Trail in the suburbs of Boston, run past ponds with swimming facilities. Another consideration is to enjoy wildlife refuges and state parks such as the Assabet River National Wildlife Refuge, which brings riders through cool wetlands. Another great experience can be had riding dirt, gravel and agricultural roads. Road bikes are fine for such use, but one should consider using a slightly wider tire in excess of 28 mm.

MTeam, Best Buddies Challenge 2019

MTeam, Best Buddies Challenge 2019

MTEAM: How about tips for cycling on freezing, snowy winter days?
RF:
To ride in winter, we subscribe to the Norwegian ethic: "No such thing as bad weather, only bad clothing." Riding year round can be done with not just owning proper clothing, but keeping it organized. We recommend riding with just three layers: a base layer, a thermal layer (we suggest wool) and an outer shell. The most important thing is to focus on the five points: your head, your hands and your feet. Experienced riders may have different gloves for every five degrees of temperature. To survive long days in cold weather, veteran riders will carry two pairs of gloves, two pairs of socks and two hats, switching them out during a stop. The key is to keep dry. Finally, even on a sunny day, riders in New England will encounter wet roads. Invest in fenders; they make a huge difference.

MTeam, Best Buddies Challenge 2019

MTeam, Best Buddies Challenge 2019

MTEAM: How far in advance should someone who completed 100 miles in 2019 start training for the 2020 ride?
RF:
Just Keep Riding. Too many people fail to recognize their best training ride of the season was the Best Buddies ride. Build upon that scaffolding with continued rides through the summer. Our biggest suggestion would be to integrate commuting and utility cycling into one's routine.

MTeam, Best Buddies Challenge 2019

MTeam, Best Buddies Challenge 2019

MTEAM: What are some of the most important features to look for if you're purchasing a new bike for the 100 mile ride?
RF:
Modern bicycles are fantastic investments. We suggest purchasing a modern road bike with drop style handlebars. Improvements in shifting and braking systems have lowered the barriers to mastery. And with disc brakes, a cyclist can ride a wider tire that can roll with less air pressure, thereby making the ride more comfortable. And by simply changing the tires, one can switch from a pure road experience to dirt trail ride. Finally, beginners would be well-served to test ride a pedal-assist electronic bike. These bikes will roll at 20 mph, but still require the pilot to work hard.

MTeam, Best Buddies Challenge 2019

MTeam, Best Buddies Challenge 2019

MTEAM: What other key accessories will you need for the ride?
RF:

MUST HAVE: Shoes, pedals, bib shorts (have at least 2 pairs)
SHOULD HAVE: Arm warmers, leg warmers, vest, rain coat
WANT TO HAVE: Decent cycle-computer with GPS device and a heart rate monitor
DELUXE: Power meter

Photo: Richard Fries - Director of Cycling Experience, Best Buddies

Photo: Richard Fries - Director of Cycling Experience, Best Buddies

MTEAM: Any other tips / thoughts / recommendations / etc...?
RF:
Repeat this mantra: Go easy when it's hard; go hard when it's easy. That is the secret to endurance riding.

A beginner and novice should focus as much on riding skills as they do on fitness. This includes getting experience riding with groups on the road.

Finally, the riders who attend the Best Buddies training rides report a huge improvement in their skills and fitness. And we have fun. Try to attend as many as possible!

Candyce CarragherComment
A Best Buddies Story: Dana Brown

Meet Dana Brown, a Best Buddies Ambassador in Tampa, Florida. Below she talks about growing up, how Best Buddies made an impact on her life, and one of the coolest memories she has so far from her time as an Ambassador.

 
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MTEAM: Tell us a little bit about yourself!
DANA BROWN:
I am from Tampa, Florida, and I work at Greenwise Publix. My department is customer service as a bagger. I am a triplet. I have two brothers but I am the oldest. From the very beginning, my brothers were crawling, talking, and walking before me. They were leaving me in the dust! After testing, I was identified with a global delay. Through the years, I have had speech, physical, and occupational therapy and worked very hard. But due to my delays, I was a shy and quiet young girl. When people spoke, they talked so fast it was hard for me to follow what they said and it made it difficult to connect socially. I had to attend my own schools different from my brothers. Now, I live with my parents. I like to go to lunch and Starbucks and concerts and shopping with my friends. I have my own dog and I drive.

 
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MTEAM: When and how did you become an ambassador for Best Buddies?
DB:
I became an ambassador in 2012 when they asked me to be in the ambassador class.

 
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MTEAM: Why is this role important to you?
DB:
I’m learning how to do speeches, and speak in front of people. One day, I hope to become a Global Ambassador.

 
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MTEAM: What are some of the coolest things you've been able to do as a Best Buddies Ambassador?
DB:
I got to go to school and speak, and I got to go on a cruise with Best Buddies. I did a speech on the cruise in front of Anthony Shriver and the staff.

 
Best Buddies Story: Dana Brown
 

MTEAM: What do you love most about the Best Buddies?
DB:
I love meeting new people. It has helped me not to be shy and to have a lot of friends.

 
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MTEAM: Do you have a favorite memory from any of the past Best Buddies events you've attended?
DB:
When I spoke in front of Anthony Shriver.

 
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MTEAM: Are you partnered with a buddy of your own at the moment? If so, tell us about him/her and some of the things you do together.
DB:
Yes, I have a buddy now. We went to Starbucks together. She is a very nice person and we both like Starbucks.

 
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MTEAM: Have you met anyone through Best Buddies who really inspires you?
DB:
Christopher Dourov. I met him at a Best Buddies event. I admire him. He always helps me and is always there to listen and is very caring. He always looks out for me. [Christopher Dourov is the Deputy Director of Jobs in the Miami/Fort Lauderdale area.]

 
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MTEAM: How would you explain Best Buddies to someone who has never heard of the organization before?
DB:
Best Buddies International helps with one-to-one friendship for people who have a disability!

 
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MTEAM: Has your involvement with Best Buddies in any way influenced your career plans for the future? 
DB:
Yes. I’d like to become a Global Ambassador and work for Best Buddies. 

A Best Buddies Story: Alphonso Murphy

Meet Alphonso Murphy, a global ambassador for Best Buddies International, the organization that the MTeam supports through our fundraising efforts. Alphonso shared his personal story with us and the reasons why he values Best Buddies and their mission of inclusion, talks about the role he envisions Best Buddies will play in his future, and shares one of his favourite Best Buddies memories from his decade involved with the organization.

 
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MTEAM: Tell us a little bit about yourself.
ALPHONSO MURPHY:
Hello, my name is Alphonso Murphy. I’m from Tampa, Florida. I enjoy hanging out with my friends, going to the movies, shopping at H&M and Old Navy, and going to Disney world. I enjoy traveling and flying to new countries and places; my goal is to one day travel to Paris, France, to see all the historic sites and museums, which are my favorite places to visit. I'm also known for my laugh; it’s so contagious, it causes a chain reaction!

Interesting fact: I was 1 lb. 12oz when I was born, three months early. The doctors thought I was not going to be able to live. I was diagnosed with a slow learning disability, a mild case of cerebral palsy, and a seizure disorder ( although I was taken off of medication when I was 12-years-old). God had other plans for my life. In the sad loss of my mother Theresa Miller, she would tell everyone that I was her miracle baby. Now, I have the opportunity to share my miracle story with you.

Currently, I'm a full time student at Hillsborough Community College, majoring in Hospitality and Tourism Management.

 
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MTEAM: How long have you been involved in Best Buddies and why it the group’s mission of inclusion close to your heart?
AM:
I have been involved with the organization for 10 years. When I think about the mission, it brings me to tears. It’s dear to my heart, because when I was in middle school, I was bullied; my book bag was thrown into the shower in the boys locker room and a student put a weight on my leg while I was in the weight room. Now staying true to the mission, Best Buddies helped me gain independence, leadership skills, and most of all building long lasting friendships with my buddies Matt, Amit, EJ, and Nick, along with other friends that I hang out with.

A Best Buddies Story: Alphonso Murphy.JPG

MTEAM: When and how did you become a global ambassador for Best Buddies?
AM:
On September 6, 2018, I completed an ambassador employment training with my state chapter USF. Then, on October 26, 2018, I was asked by Jaclyn Clark, a former program manager for my chapter, to speak with my buddy EJ at our Champion of the Year gala. Mrs. Ashlee Simmens and Mr. David Quilleon liked how I delivered my speech, and that is how I became a global ambassador for Best Buddies.

A Best Buddies Story: Alphonso Murphy.JPG

MTEAM: What are some of the coolest things you get to do as an ambassador for Best Buddies?
AM:
I get to network with different people and, share my story, participate, and help out with different events through best buddies. And I get to speak at different cool events like the Hyannis Port Best Buddies Challenge.

 
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MTEAM: What do you love most about the Best Buddies and why is their work important? How have they helped to support you personally?
AM:
I love developing the one-on-one friendships and to be able to share my story no matter where I go. It gives young adults with disabilities a chance to advocate for their rights and to be able to have employment opportunities, and gain independence to excel in the world.

 
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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?
AM:
I would love to travel around with Best Buddies to different countries, speaking and sharing my life story on how I overcame so many obstacles in my life, to inspire others with all types of disabilities that there is hope; you just have to keep the faith and always stay positive! And yes, I would like to become a professional motivational speaker.

 
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MTEAM: How would you explain Best Buddies to someone who has never heard of the organization before?
AM:
I would first give them a short elevator speech with my name and how best buddies has impacted my life, and leave them with my business card. Than I would invite the person to come out to one of our Best Buddies functions that we have on USF campus to help them get more involved and to see if they would like to be matched with a young adult that has a disability.

A Best Buddies Story: Alphonso Murphy.JPG

MTEAM: Have you met anyone through Best Buddies who really inspires you? Who and how so?
AM:
Kellie Howard. Not only is she one of my closest friends and like my big sister, but she has a cool genuine love for Best Buddies and, despite all she had to go through growing up, she does not let anyone limit her abilities to be excel in life.

 
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MTEAM: Do you have a favorite memory from your time with Best Buddies?
AM:
When I first became team captain of my chapter back in April 2013, it was hard trying to call every member on my team to push them so we could win the next incentive, and sending inspirational messages to post on the team page to inspire their family and friends to give more funds so we could go to the Best Buddies Leadership Conference, but through staying positive and a whole lot of praying, we came in second place. We even won the VIP tent that year!

 
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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?
AM:
The sky is the limit. Sometimes you have to go out and try new things. You never know what you can do. Doors are waiting to open just for you. Inclusion is the key to happiness!

 
A Best Buddies Story: Alphonso Murphy.JPG
 
24 Motivational Cycling Quotes to Inspire You for the Best Buddies Challenge

There’s just over 10 months to go until the Best Buddies Challenge, but there’s no better time to start training for a cycle ride that pushes your current boundaries than now.

Some dedicated MTeamers tackle the 100 mile ride each year; others take on the 50 mile ride; and quite a few others enjoy riding 20 miles. Whichever ride you’re training to complete in May 2020, it’s always great idea to ride consistently throughout the year, ramping up your efforts as you feel comfortable with your current accomplishments.

 
24 Motivational Cycling Quotes to Inspire You For The Best Buddies Challenge.png
 

We’ll be checking in with some more specific tips in the coming weeks and months, but in the meantime, we hope you feel inspired by these motivational cycling quotes!

“Nothing compares to the simple pleasure of riding a bike.” – John F Kennedy

“When the spirits are low, when the day appears dark, when work becomes monotonous, when hope hardly seems worth having, just mount a bicycle and go out for a spin down the road, without thought on anything but the ride you are taking.” – Arthur Conan Doyle

“You are one ride away from a good mood.” - Sarah Bentley

“Your bike is discovery; your bike is freedom. It doesn't matter where you are, when you're on the saddle, you're taken away.” - Doug Donaldson

 
“Your bike is discovery; your bike is freedom. It doesn't matter where you are, when you're on the saddle, you're taken away.” - Doug Donaldson.png
 

“[Commuting by bicycle is] an absolutely essential part of my day. It’s mind-clearing, invigorating. I get to go out and pedal through the countryside in the early morning hours, and see life come back and rejuvenate every day as the sun is coming out.” - James L. Jones

“One of the most important days of my life, was when I learned to ride a bicycle.” — Michael Palin

“Ever bike? Now that's something that makes life worth living!...Oh, to just grip your handlebars and lay down to it, and go ripping and tearing through streets and road, over railroad tracks and bridges, threading crowds, avoiding collisions, at twenty miles or more an hour, and wondering all the time when you're going to smash up. Well, now, that's something! And then go home again after three hours of it...and then to think that tomorrow I can do it all over again!” - Jack London

“When I see an adult on a bicycle, I do not despair for the future of the human race.” - H.G. Wells

“Training is like fighting with a Gorilla. You don’t stop when you’re tired. You stop when the Gorilla is tired.” - Greg Henderson

 
“Your bike is discovery; your bike is freedom. It doesn't matter where you are, when you're on the saddle, you're taken away.” - Doug Donaldson (1).png
 

“The bicycle saves my life every day. If you've ever experienced a moment of awe or freedom on a bicycle; if you've ever taken flight from sadness to the rhythm of two spinning wheels, or felt the resurgence of hope pedalling to the top of a hill with the dew of effort on your forehead; if you've ever wondered, swooping down bird-like down a long hill, if the world was standing still; if you have ever, just once, sat on a bicycle with a singing heart and felt like an ordinary human touching the gods, then we share something fundamental. We know it's all about the bike.” - Robert Penn

“She who succeeds in gaining the mastery of the bicycle will gain the mastery of life.” - Frances E. Willard

“I have always struggled to achieve excellence. One thing that cycling has taught me is that if you can achieve something without a struggle it’s not going to be satisfying.” - Greg LeMond

“For those who race, there’s no better sensation than being on top of your gear making mountains feel like flat roads. Cycling throws up plenty of obstacles, unknown territory, high speed split-second considerations. Where to next? What’s around the next corner? Who cares? You’re flyin’!” - Cadel Evans

“Think of bicycles as rideable art that can just about save the world.” - Grant Petersen

 
“Your bike is discovery; your bike is freedom. It doesn't matter where you are, when you're on the saddle, you're taken away.” - Doug Donaldson (3).png
 

“My two favorite things in life are libraries and bicycles. They both move people forward without wasting anything.” - Peter Golkin

“Cycling is my ideology, a system of thought based on purity and economy of motion, kindness to the environment and drop handlebars, and I want to convert others.” - Robert Hanks

“Ride as much or as little, as long or as short as you feel. But ride.” – Eddy Merckx

“Cycling does it all – you have the complete satisfaction of arriving because your mind has chosen the path and steered you over it; your eyes have seen it; your muscles have felt it; your breathing, circulatory and digestive systems have all done their natural functions better than ever, and every part of your being knows you have traveled and arrived.” - John Foreste

“The best rides are the ones where you bite off much more than you can chew, and live through it.” – Doug Bradbury

 
“Your bike is discovery; your bike is freedom. It doesn't matter where you are, when you're on the saddle, you're taken away.” - Doug Donaldson (4).png
 

“You can’t get good by staying home. If you want to get fast, you have to go where the fast guys are.” – Steve Larsen

“After a long day on my bicycle, I feel refreshed, cleansed, purified. I feel that I have established contact with my environment and that I am at peace. On days like that I am permeated with a profound gratitude for my bicycle … What a wonderful tonic to be exposed to bright sunshine, drenching rain, choking dust, dripping fog, rigid air, punishing winds!” - Paul de Vivie

“There is beauty in silence and there is silence in beauty and you can find both in a bicycle!” - Mehmet Murat ildan

“A bicycle is a bit like a guitar in that they are both inert objects that only come alive and flourish when put in contact with a human being. Both have the ability to concentrate the mind. Just as when you are performing, you tend to lose yourself when you are on the bike. For those precious hours that you are in the saddle, nothing else matters except the bike and the road ahead.” - Spandau Ballet’s Gary Kemp

“When your legs scream stop and your lungs are bursting, that’s when it starts. That’s the hurt locker. Winners love it in there” – Chris McCormack

Feeling inspired? We’re welcoming new cyclists to the MTeam for 2020!

10 Minutes With: Jennifer Bothe

Meet Jennifer, a nurse, and mom to Ella and Ethan. Below she talks about what it’s like to have a child (Ethan) who was born with Chromosome 18q Deletion Syndrome, the wonderful sibling relationship between Ella and Ethan, and how deciding to share her story publicly through her blog and Instagram opened up a huge support network.

 
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MTEAM: Tell us a bit about yourself and your family.
JENNIFER BOTHE:
My name is Jennifer Bothe and I grew up in a small town called Sherwood Park, which is located in Alberta, Canada. Sherwood Park was home for 29 years, and then we got an opportunity to move to the USA (North Carolina) for my husband's job which we decided to take, and we have been here since 2015. I have two children, Ella (3-years-old) and Ethan (15-months-old), and 2 dogs (Dexter and Maya).

DD photography (Deanna Decker photography)

DD photography (Deanna Decker photography)

DD photography (Deanna Decker photography)

DD photography (Deanna Decker photography)

MTEAM: Ethan was born with Chromosome 18q Deletion Syndrome. For those who haven’t heard of this, can you help us understand a bit about what it is and how it manifests itself?
JB:
Chromosome 18q Deletion is a rare genetic condition which leads to a variety of medical diagnoses. It occurs in 1/55,000 children, and can be inherited from a parent or it can be "de novo" meaning it is unique to the child. Ethan's case is "de novo" meaning neither myself nor Kyle has any characteristics of the deletion. Just as the condition is rare and unique, so is its presentation in each individual child. Every case manifests differently, and therefore the doctors cannot paint a very accurate picture of what Ethan's future will look like. We are working mostly with % chance of him developing various medical conditions.

So far, Ethan has largely been affected by his deletion from a developmental and growth standpoint. He has hypotonia (which means very low muscle tone), which can make it difficult for him to achieve his motor milestones. The low muscle tone has also contributed to some swallowing difficulties, so he has dysphagia and needs to have feeding therapy. He struggles with a lot of difficulties with allergies, which present both anaphylactically and through severe eczema, and he has been diagnosed with FPIES (Food Protein Induced Enterocolitis). Most recently, we have found that Ethan has a severe growth hormone deficiency, and we are looking into insurance approval to start hormone replacement therapy. A lot of 18q- children have cognitive delays as well, but Ethan is too young for us to know the true extent of his cognitive abilities.

 
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MTEAM: Tell us a bit more about Ella and Ethan (How old are they? What do they love most? What makes them happy? What makes them uniquely Ella and Ethan??)
JB:
Ella is 3-years-old. She is fiercely independent, and firey. Her aunt describes her as an old soul because despite her free spirit she is undeniably caring and empathetic. Ella was recently diagnosed with childhood apraxia of speech (CAS), meaning she has problems with the motor pathways of speech development. She knows what she wants to say and has no difficulties with understanding, but she cannot make her mouth do what she wants in order to make her speech intelligible. She is in speech therapy 3x a week and has made incredible progress. My heart breaks for her when I know she is trying to tell us something and we cannot understand, but she is incredibly determined and has made amazing progress even in the last four months, so I know this is something she will be able to overcome. She loves her family, swimming, dancing, going to the park, playing hockey/soccer outside, horses, and Paw Patrol. She's also incredibly funny and full of personality.

Ethan is so different from his sister. He is cuddly and affectionate and a lot less fearless. He is without a shadow of a doubt the sweetest, most genuinely happy soul I have ever had the pleasure of interacting with. His big brown eyes and smile bring joy to any room. He spends most of his days giggling and smiling. He is social and loves to interact with people and has an undeniable ability to make whomever he encounters instantly fall in love with him. Since he started crawling, he gets into all sorts of trouble, it's amazing as a mother to see his natural curiosity blossom even if it keeps me on my toes! He loves Ella, his family, his puppies, The Wiggles, dancing to any music, playing in the water, and being cuddled.

 
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MTEAM: What’s a typical day in Ethan’s life like?
JB:
Every day is different! But a typical week involves a lot of therapy. Ethan currently participates in physical therapy, occupational therapy and feeding therapy on a weekly ongoing basis. It's funny how fast these providers work their way into your family, and we truly think of them as family now. Without their help and early intervention, I think it's safe to say that Ethan would not be nearly as far along as he currently is. We are so grateful for all their help. Between the regular therapy, we have a lot of appointments with specialists. cranial specialist (for his plagiocephaly, which is why he wears a helmet), GI doctor, urologist, allergist, orthopedic surgeon, endocrinologist, and more. When we are not at the doctor, we are busy playing together or with our friends or, practicing his skills.

 
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MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Ethan so far?
JB:
I think the biggest of my challenges have been emotional. Yes, you become busy and it's hard to balance everything, but the emotional weight that having a child with unique needs brings is something that is impossible to understand until you are living it. It is so incredibly difficult to watch your baby go through such big challenges in life (especially at such a young age). I've said before that I think this is where the expression "loving someone so much it hurts" comes from, because seeing your children hurt makes you, as a parent, hurt ten-fold. No one wants to watch their child struggle in any capacity, so being forced to do this over and over can be grueling. It was important for me to find people to talk to, and to accept that Ethan is on his own unique timeline and shouldn't be compared to anyone else. Once I allowed myself this little bit of grace, things have been so much easier. As for rewards, I think every day I get to spend with Ethan is a gift. Having a child with unique needs comes with a lot of uncertainty about their future, so I try to see every single day as a blessing.

 
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MTEAM: Tell us a bit about Ella and Ethan’s relationship. What do they like to do together? Do you have any advice for parents on how to explain a special needs diagnosis to a sibling?
JB:
Ella is an incredible sibling to Ethan. I really hit the jackpot with her as a sister. Ethan could spend all day laughing at her crazy antics and he is in complete awe of her. As a mother, it is so heartwarming to see them interact. His love for her is undeniable and to say he already looks up to her would be an understatement. Ella is the perfect sister for Ethan. She senses his vulnerability which allows her to be extremely empathetic and caring. She never hesitates to lend a hand with Ethan; she loves to feed him, help with baths, share her snacks and toys with him, help take care of him, and give him hugs and kisses when he is hurt (or even when he isn't). When he cries, she always tries to make him laugh to cheer him up. She also watches all of his therapy appointments very closely (she is fiercely protective). I can see their bond growing stronger every single day. He makes her a better person and learns so much from her.

As for advice on explaining a diagnosis to a sibling, I have none... does anyone have advice for me?! Ha ha! Truthfully, we haven't told Ella that Ethan is any different than any other child, and as a result she doesn't treat him any differently, and I think that's what most children with different needs want. They just want to be loved and treated the same as anyone else.

 
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MTEAM: Share a memory of one time you were especially proud of each of your children!
JB:
I know this sounds cliche, but I am truly proud of each of them every day. They both fight their own battles, but I'm so proud of who they are becoming. Ella is polite, kind and loving and her speech is getting more intelligible every single day. Every speech session she takes part in fills me with pride because she works SO hard coming up with the right sounds and words. And when she finally achieves something very difficult that she's been working on for a long time, she beams with the same pride that I do! I make a point of telling her how proud we are of her and all her efforts every single day.

Like Ella, I'm proud of Ethan every day. Every test, procedure ,and doctors appointment, no matter what they are doing, he meets it with a smile. He is already very patient, allowing clinicians to poke and prod him, and his positivity is contagious. Something that really sticks out to me is when Ethan started to crawl. It was something we were told he may never do, so after 14 months of working towards it, to watch him actually accomplish it filled me with overwhelming and intense emotions. It was so raw and real, I cried and cried. I was so unbelievably proud of him.

 
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MTEAM: Your blog and Instagram are full of beautiful stories and photos, especially of your family. What role has this community played for you along your journey as a special needs family and why are these creative outlets important to you?
JB:
I don't think I could possibly put into words how important the "special needs" community has been for us. After receiving Ethan's diagnosis, I felt broken and lost. Living in a different country with no family or friends really didn't help that feeling, so I started aimlessly searching around, desperate to connect to someone who knew what we were going through. I found a few 18q- groups and the research society, but it wasn't until about six months ago when I started my Instagram page and blog for Ethan that I really started to feel this sense of community.

Kyle and I had a long talk about sharing Ethan's story publicly, we had been extremely private people up to that point (except with our close friends and family), and in fact a lot of our closest friends didn't even know about Ethan's medical diagnosis... but it was those feelings of being lost and disconnected with the special needs community that spurred me on to publicize Ethan's journey. I think it was one of the best decisions I could have ever made. All my fears about posting publicly have been replaced by the overwhelming sense of community and positivity. I can truly say that some of the social media relationships that I have fostered as a result are now true friendships. It's also an incredible platform to raise awareness for rare diseases and conditions, and even as a nurse I am learning so much every day about different conditions from other parents who share about their children too. It's so amazing to find a group of people who truly get what you are going through on a day-to-day basis even if their child doesn't have the same diagnosis. We have expanded our cheering section by hundreds of people and I'm so grateful to everyone cheering Ethan (and Ella) on from afar.

 
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MTEAM: What key changes would make this a more inclusive world for children like Ethan who have special needs?
JB:
This is such a tough question. When you google the word inclusion, the definition that comes up is "a model whereby special needs students spend most of their time with non-special needs students."

Frankly, inclusion is a lot more than a child's proximity to children with different needs than theirs. It transcends just actions... It's an entire thought process. It's acceptance and welcoming. It's how you talk to families. It's equality and opportunity. It's appreciation, participation, and respect, and it's treatment. It's how you treat those around you who may be different in any way.

As parents it's really important to put information out there, to continue to advocate and be a voice for our children who can't speak for themselves. Doing interviews and articles like these are a great first step to raising awareness. A quote that I read a long time ago that has always stuck with me is, "I wouldn't change you for the world, but I would change the world for you.”

RB Campbell photography

RB Campbell photography

SW photography (Stacey Williams photography)

SW photography (Stacey Williams photography)

MTEAM: If there was one thing you’d most like the world to know or understand about Ethan or about Chromosome 18q Deletion Syndrome generally, what would it be?
JB:
The message I would choose to convey about 18q or any medical diagnosis really is that you need to expect the unexpected. Children are so resilient and so much stronger than we give them credit for. Your child will do so many things that all children do, but it will be on their own timeline, so don't compare them to other kids. They are unique. Allow yourself to accept that things will happen at a different rate and you will be able to celebrate even the tiniest milestones as huge successes! Miracles happen every day, so never give up on your child!

A Best Buddies Story: Alan Raskin

Meet Alan Raskin who has been a global ambassador for Best Buddies for just over a year. Below, he talks about how his personal experience with bullying and the inclusive mindset of Best Buddies lead him to join this community, which has since incfluenced the career path he intends to pursue.

 
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MTEAM: Tell us a little bit about yourself!
ALAN RASKIN:
I'm from Rochester, NY. I love travelling and learning new information. I NEVER pass up on an opportunity to try something new. I like to write creatively (short stories, poems, etc.) Most importantly, I love Best Buddies and all they do for the community.

 
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MTEAM: When and how did you become an ambassador for Best Buddies?
AR:
I did speeches before through my local office. I saw inequality as a huge problem, and I wanted to change my community. In February 2018, I did a TEDx Talk about ableism in our middle schools and high schools. I don't know how the process worked exactly, but about a month later, when the speech was visible on YouTube, my program manager informed me that I was offered to be a global ambassador. I was excited, scared, and confused all at once. But, like I said earlier, I don't pass up great opportunities, so I took it, and I'm glad I did.

 
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MTEAM: Why is this role important to you?
AR:
This role is important to me because it's how I can make my mark on the world. Everyone has a purpose to help the world, and people find careers in the ways that they can help the world best. For me, I see a lot of inequality, bullying, and exclusion, and I'm not afraid to stand up to it. I can speak publicly and spread inclusion—both things that I genuinely love doing. Global Ambassadors is a way I can do those things. It gives me the knowledge that what I say in my speeches makes an impact, and that motivates me to do more every day.

 
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MTEAM: What do you love most about the Best Buddies? What value has this organization brought to your own life?
AR:
Best Buddies has without a doubt changed my life. When I joined two years ago, I was very shy and didn't speak much. Through our chapter meetings, I slowly opened myself up to more friendships. With the help of Best Buddies, I turned from a barely speaking person to a confident advocate and activist. I can tell you, nothing could have really prepared me for 8th grade, when a group of students was bullying me. But, it was the inclusive people of Best Buddies that helped get me through that time and get the help I needed. I now look at my life from a completely different viewpoint. I am more inclusive, more confident, and infinitely happier thanks to Best Buddies.

 
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MTEAM: Do you have a favorite memory from any of the past Best Buddies events you've attended?
AR:
The main Best Buddies event that I've been to is the Leadership Conference in Indiana. I believe it was the second day there, I was working with other ambassadors and members of YLC, and we were talking about how we can use our strengths to help the world around us. I guess, at one point, I stopped feeling like I was with a community, and I started feeling like I was a part of the community. I really felt appreciated, like my ideas had a place to belong, and so did everyone else's ideas. Meeting and communicating with such impactful and supportive people was life-changing.

 
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MTEAM: Are you partnered with a buddy of your own at the moment? If so, tell us about him/her and some of the things you do together.
AR:
I am currently partnered in a buddy pair with a student in my school named Veronica. Although this was our first year together, and with the stresses of high school it can be hard to set aside time for us, we still managed to see each other as much as possible. We see each other often in the hallway, and we stop just to have a chat. We've gone bowling before, and it was really fun! It feels like what a high school friendship should be, and that's the goal of these buddy pairs.

 
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MTEAM: Have you met anyone through Best Buddies who really inspires you? If so, who?
AR:
While I have met countless inspiring people through Best Buddies, if I had to pick one in specific, it would be Alphonso Murphy. He and I met last year at LC. He always had a smile on his face and a joke in his back pocket. He's a really great person to be around, and on top of that, the work he does is incredible. He and I are currently working together on YLC, and he's been the best mentor and friend I could ask for there.

 
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MTEAM: How would you explain Best Buddies to someone who has never heard of the organization before?
AR:
It really depends on the situation there. What I do, personally, is find the way that Best Buddies can best impact the person I'm talking to, and I emphasize that point. For example, If I'm talking to a student, they would most likely want to hear details about the one-to-one friendship programs we have. I start off with our goal, to create inclusion between people with and without IDD (Intellectual/Developmental Disabilities). Then, I talk about what we do specifically, and I always make sure to have a few statistics ready so I can explain why exclusion is a serious problem and how Best Buddies is helping create inclusion. If necessary, I might throw in a personal story. I've learned to read whatever situation I'm in to decide what points to emphasize.

 
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MTEAM: Has your involvement with Best Buddies in any way influenced your career plans for the future?
AR:
Definitely. I didn't have much of an idea for a career before Best Buddies. I was thinking about either an architect or a chef (now I say that and laugh). Because of what I've learned through Best Buddies, I have taken an interest in pursuing law. We've gone a long way in terms of laws that help people with disabilities and other minorities, but they can be improved. Given that, I want to be a lawmaker, and I want to continue working with Best Buddies well into my later life.

 
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MTEAM: What key changes would make the world a more inclusive place for people with intellectual and developmental disabilities?
AR:
I think the key changes to having a more inclusive world would be having a more inclusive mindset. This means things like ensuring that wheelchair accessible ramps, ASL interpreters, inclusive classes, and more aren't an "extra thing" that places can have, but rather a necessity that more places need to have. This is just where we start to solve the problem, though. From what I have experienced, our middle schools and high schools aren't doing their part in creating inclusivity. Very often, we see cliques of students bullying other students, especially ones with disabilities. Very often, people make excuses for this exclusionary behavior, saying, "teens will be teens" or, "you can't expect kids to abide by these rules." But, we can. To start creating an inclusive environment, we have to start at the root of the problem: the schools and teens. By holding students to a higher standard of kindness, inclusion, and empathy, we can prepare our next generations of leaders for the diverse environment they will be in beyond high school. And, we can further include people with disabilities in our world.

 
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Looking Back: The Best Buddies Challenge 2019

First of all, thank you!

If you were an MTeamer during our fourth year participating in the Best Buddies Challenge, thank you. We had nearly 60 members this year. If you were one of our incredible corporate sponsors, thank you. If you donated to one of our team members, thank you. If you helped share our messages on social media, thank you.

Thank you to Meredith Lewis for being the best Chief Motivating Officer.

And thank you to John Christian, MTeam Captain, who keeps us all on our toes and whose vision, leadership and generosity has transformed us into the force we are together today. Of course, he has a message for you:

“This is our 4th year participating in the Best Buddies Challenge. We started with six people four years ago, and we were 60+ this year. I have never seen so many happy, smiling, and committed MTeamers in one place. I am still riding the wave of love and energy from this year’s experience and want to thank all of you for your passion and support for our community. Let’s make this 100 people for 2020!”  - John

 
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The Fundraising

Together, we raised an estimated $150,000 for Best Buddies in our 2019 season.

This money will go toward the programs that Best Buddies has designed to make the world a more inclusive place for people with intellectual and developmental disabilities in areas of employment, leadership, friendship and inclusive living. You can read more about their fiscal responsibility, each of those programs and where that money actually goes on our blog.

It’s only by coming together as a team and community that we could make the sort of impact that we’ve made this year, but we also want to give an extra special shoutout to our top 10 fundraisers who deserve recognition for their efforts:

 
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Amazing work, everyone!

We also could not have made the impact we did without the help of our incredible and generous corporate sponsors: CAPA The Global Education Network, The Urban Hound, Anglo Educational Services and Apex Velo. We appreciate the ongoing support from all of you.

 
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The Best Buddies Challenge: Cycling, Running and Walking

Beyond fundraising, we also have some wins to celebrate in the physical challenges of the event! We’re thrilled to announce that three MTeamers placed among the top three in their chosen races.

Congratulations to Travis Wold for coming in at number one in the men’s 100 mile cycle ride.

Congratulations to Spencer MacAlaster for coming in at number three in the men’s 100 mile cycle ride.

And congratulations to Catherine Colon for coming in at number three in the women’s 5k run with a time of 23:27.

 
Left to Right:   Travis, Spencer and Catherine after their races

Left to Right: Travis, Spencer and Catherine after their races

 

Incredible effort from all of you and amazing accomplishments to be proud of. To everyone who pushed their physical limits for the Best Buddies Challenge, whatever those may be, a huge congratulations to all of you too.

The Jerseys

This year, we sent Spencer Williams up on stage to model our jerseys for a fashion show and competition. We’re very proud to have been the recipients of the Best Design and Concept award. If you know the story behind our jerseys, you’ll understand why we won. Plus, just look at them, right?!

Mer’s dad Greg reflected on Meredith’s experience at the event:

“Meredith recently enjoyed her 4th consecutive Best Buddies Challenge as a member of the MTeam! This year was especially memorable because the artwork that Mer created with her eyes was incorporated into our MTeam jersey design. Winning best jersey design was outstanding but, more importantly, it is a representation of how this event is so much more than one weekend. The MTeam is an inspiring movement driven by passion, love and the desire to empower all involved. 2020 here we come!!”

 
 

Press Coverage

Greg and Laura Lewis advocate tireless for Meredith (the “M” in our MTeam and our Chief Motivating Officer). Greg had the opportunity to speak with some local news teams to share the MTeam story and we are grateful that several of them, including CBS News and NBC Boston included us in their footage of the event. (Click the links to watch!)

 
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The MTeam Experience

Our wonderful videographer Aaron Wong captured some footage of the event that we’re excited to share with you:

 
 

From the community spirit that we felt with all of the MTeamers together in one place, to meeting the buddies, cycling, running, walking, enjoying the food and concert, it’s safe to say it was an experience worth repeating.

And we will be.

We’ve signed up for our 5th year as the MTeam already. Registration is now open. Join us for 2020?

10 Minutes With: Jennie Wilklow-Riley

Meet Jennie, mom to three kids, including Anna, her youngest, who was born with a rare genetic disorder called Harlequin Ichthyosis. Below, she talks to us about life with Anna, her passion for helping other families who are touched by the same condition, and how confidence and kindness will go a long way in making Anna’s future a place where she will feel accepted and included.

 
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MTEAM: Tell us a bit about yourself and your family. 
JENNIE WILKLOW-RILEY:
My name is Jennie Wilklow-Riley and I am married to James Riley. We are from upstate New York and have three kids: Andres (10), James (4), and Anna (20 months). We have three dogs and two cats and we really just had a peaceful average life.

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MTEAM: Your daughter Anna was born with Harlequin Ichthyosis. How common is it? Can you explain a bit about what it is exactly for those who are unfamiliar and how it has manifested itself in Anna’s life in particular? 
J W-R:
Our daughter Anna was born on September 17, 2017 with Harlequin Ichthyosis. This an ultra rare genetic disorder that affects an estimated 1 in 500,000 to a million births annually. Estimated numbers vary greatly because of how rare it is. This disorder is from a genetic mutation on the Abca12 gene that causes the outer layer of skin to not form correctly. 

 
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MTEAM: Tell us a bit more about Anna! (How old is she? What does she love most? What makes her happy? What makes her uniquely Anna??)
J W-R:
Because of the skin not forming correctly, Anna’s body creates skin at an accelerated rate in an attempt to fix itself. Anna produces skin at ten time the average rate and cannot complete the shedding process on her own. A typical day starts with a 3-4 hour bath to help her extra skin come off. She also needs a lot of calories because the the skin production uses so much of the body’s energy. Anna then is covered in aquaphor to try to seal in any hydration that can be kept in the skin. Anna cannot sweat and she can hold in moisture either. Temperature control is also a big obstacle, because she can overheat easily. 

 
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MTEAM: What’s a typical day in Anna’s life like?
J W-R:
With her medical needs aside, Anna is a normal sassy 20-month-old. She is all over the place, getting into everything and she loves to eat! Anna really enjoys going outside to play and she thinks dancing is the best. Anna thinks accessories are amazing and insists on a headband every day and often sunglasses or jewelry. Basically, she is the coolest human that has ever existed. 

 
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MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Anna so far? 
J W-R:
My biggest challenges came first: getting her out of critical condition when she was born and then the time when I first came home with her from the hospital. I struggled to understand why this had happened to me and how I was supposed to cope. I felt like it was all my fault for wanting a girl so badly. My biggest rewards are to long to list, but Anna herself is at the top of the list. The joy she gives me every day is irreplaceable, and I think often how I almost didn’t have her. Second would be my ability to help others in the Ichthyosis community. Either with acceptance or supplies, the list never ends and it’s truly a passion.

 
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MTEAM: What advice would you offer to other parents who are just finding out about a Harlequin Ichthyosis diagnosis?
J W-R:
I have been lucky enough to speak with a few new moms already either Harlequin or other Ichthyosis types. I always get them in touch with FIRST (the Foundation for Ichthyosis and Related Skin Types). After, I just tell them to take one day at a time and soon enough it will be your new normal. 

 
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MTEAM: How would you like to hear other parents respond if their own children notice and ask questions about Anna’s physical differences?
J W-R:
I just don’t think it helps to quiet your kids and rush them away. Teach them to treat people like humans first of all and then, once a relationship is established, ask respectfully the questions you might have. I would rather a child come up and ask nicely because usually once they understand, then they go about their life like nothing happened. 

 
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MTEAM: What key changes would make this a more inclusive world for children with Harlequin Ichthyosis?
J W-R:
The biggest change I would make is to not make everything so taboo. I want to change the way the world looks at rare and, instead of negative, I want to see a positive spin put on being different. It’s not only okay to be different, it’s also wonderful and beautiful. 

 
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MTEAM: Share a memory of one of the times you’ve been especially proud of Anna.
J W-R:
I’m proud of Anna when she is very outgoing. I love when she says hi to strangers and waves and blows kisses. I think if she can hold onto that level of confidence, then she will be just fine.

 
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MTEAM: What’s one thing you’d like the world to know about Anna or Harlequin Ichthyosis or medically complex or fragile children generally?
J W-R:
I would like the world to know that behind the child that looks different, there is a human being. They hurt just like you hurt and they want acceptance just like anyone does. Sometimes it’s okay to not get an answer to every question you have and just to treat people how you would want to be treated. 

 
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CAN YOU HELP US MAKE THIS WORLD A MORE INCLUSIVE PLACE?

Join The MTeam for 2020

Best Buddies Challenge 2020, here we come! 

It’s our 5th season together as The MTeam, and it will be a standout year for us. Sign up today and join us while we have an entire 12 months ahead to reach our fundraising goals. 

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If you cycled, ran or walked with us in Hyannis Port earlier this month, you can remember the high of crossing the finish line. You can remember the cheering, meeting some of the buddies, the endorphins that flood your body, the medal around your neck that symbolizes the completion of your goals, the feeling that we’ve accomplished something amazing together. And, of course, the MTeam spirit. We welcome you all back for a repeat experience!

If you’re new to this, then you have a lot to look forward to when you become part of the MTeam community. We’re always here to answer questions if you’re still considering it, so just send us an email or reach out on social media. You can read more about the team on our blog and about page.

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What happens when you join? 

  • You’ll receive a welcome pack from our team captain. It’s packed full of tips and resources that will help you meet your fundraising and training goals.

  • You’ll be invited to join the MTeam’s private Facebook community where team members can mingle, ask questions, get to know each other and share their experiences.

  • You’ll receive regular newsletters and communications from the team leaders and find daily updates on our social media, so you won’t feel like you’ve signed up for something and have been abandoned!

  • You’ll be invited to participate in various fundraising events we hold throughout the year, from spin-a-thons to our annual “sequins & fedoras”-themed spring gala casino night in our Boston headquarters.

  • You’ll receive the new, customized MTeam kit that we design differently each year (our 2019 kit won Best Design & Concept, so this is definitely something to look forward to!).

  • You’ll be able to meet Meredith and her family. Mer is the “M” in our MTeam and our Chief Motivating Officer who keeps us all going with her beautiful smiles.

  • You’ll be able to be involved in our efforts to advocate for inclusion for Mer and others who have intellectual and developmental disabilities. Last year we were able to donate some amazing technology to Mer’s school that is helping her and her classmates who were previously unable to communicate to do so through their eye movements. Life- changing stuff!

  • You’ll become part of a caring and supportive community.  

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There’s so much negativity in our world today, so make a decision to do something positive with us this year. Join us as we support the work of Best Buddies International and make a real impact for people who need love, support, friendship, job opportunities and the resources that will help them advocate for themselves and others. 

Are you in?  

10 Minutes With: Jenna Gines

Meet Jenna, a huge advocate for people with disabilities and mom to three sweet kids: Lincoln, Jackson and Kennedy. Below, she shares Jackson’s story of life with an undiagnosed, rare genetic disorder and her continuous fight for inclusion. Read on to find our more about what Jackson loves most, how he bonds with his siblings and the amazing progress he’s been working hard to make over the past year.

 
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MTEAM: Tell us a bit about yourself and your family.
JENNA GINES:
Hello! My name is Jenna Gines. I was born and raised in Utah. I've also lived in Alabama, Mississippi, California, Kentucky, Indiana and Michigan. I have three beautiful children, ages 4, 3, 1 and a puppy named Teddy. Yes, it is a circus. Yes, I am right in the thick of motherhood and I love it. Everything in my home has a place, I love cleaning and organizing, change and exploring new places. I love empowering women through life, motherhood and life with a diagnosis. I'm a huge advocate for people with disabilities and love the light they bring to this world.

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MTEAM: Your son Jackson was born with a rare undiagnosed genetic disorder. Can you explain a bit about how this manifests itself in his life? How are his needs different from his siblings’?
JG:
My second son Jackson, who is 3-years-old, was a surprise from the very beginning. It didn't take us long to get excited to have two boys, 17 months apart. He was a beautiful, healthy baby. I remember telling my husband, there is something about this boy, I could feel it. A few of our family members started noticing that his eyes would shake a little when you would rock him. I hadn't really noticed it, but said that I would mention it to his pediatrician. His doctor said, "It looks like he has Nystagmus; do you notice anything else about him?" I thought, now that you say that, he's not sitting or rolling very much. That started the entire process... We met with a neurologist who suggested we start with blood work and an MRI and we went to see the eye doctor. We received a diagnosis in October 2016. Since that day, we have worked with a genetics doctor who can't find the gene or rare genetic disorder. So we don't know what Jackson "has" or why his body works differently than ours.

MTEAM: Tell us a bit more about Jackson!
JG:
Jackson has glasses to help him see clearer and keep his eyes straight. He has low muscle tone and is currently learning to walk. He army crawls around or uses his wheelchair to get around. He's also working on communication. He says a few words and uses sign language. He loves his brother and sister, dinosaurs, cars, trucks, being outside, airplanes, making new friends, reading books, music and car washes. He also goes to preschool four days a week and loves it! He brings a light and happiness with him wherever he goes. We're a little obsessed with him and think he's just the best.

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MTEAM: Tell us about your other children’s relationship with Jackson: what do they enjoy doing together? How do they bond? How has growing up with a sibling who has different needs played a role in the way your other children are growing up? 
JG:
Jackson loves his brother and his sister. He has been especially obsessed with his sister from day one. It's been so fun to watch. When she was a newborn, he would cry whenever I moved her away from him. It was so sweet and kind of funny! He LOVES her! He loves to play with toys with them and wrestle. Lincoln and Kennedy will grow up knowing that everyone is different and that we all have different abilities. They will grow up serving and helping their brother. I love seeing them all play, interact and the love they have for each other. I know Jackson was our surprise on purpose and he's in the middle of them for a reason! I LOVE that they're all so close in age and will experience everything in this life together.

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MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Jackson so far?
JG:
Some of the biggest challenges with Jackson have been communication and inclusion. I know it's so frustrating for him when he can't move like he wants and especially say what he wants. He understands everything we say, as much as any 3-year-old, but it's getting it out that is the difference for him. Also, not living in an accessible world is a challenge. You don't realize until you use a wheelchair or you have a child that uses a wheelchair. The world has come so far, and I feel like everyone is truly trying, but there are still so many ways to improve. Taking him to a park is a challenge, even "accessible" parks. A lot of the time there is nothing he can do. Having a ramp or making it wheelchair accessible, isn't good enough. We have to be creative to include him and I try so hard every single day to include him in our everyday and for every holiday, doesn't matter what it is, we find a way to include Jackson always.

MTEAM: What advice would you offer to other parents who have a child who has a different needs diagnosis?
JG:
One of my life's missions is to empower momma's who receive a diagnosis for their baby or child. I don't want them to be sad and constantly living in a state of wishing their child wasn't this way. There is such power in accepting this new life! I want them to know it's going to be okay. That their baby is still their baby and they will still do amazing, incredible things. It's just a new, different life. It's okay to mourn the baby you thought you had and mourn the life you thought you had. And then accept this one! Because it's oh so good. You will meet people you never would have met and you will learn things you never would have learned. 

MTEAM: How would you like to hear other parents respond if their own children notice and ask questions about Jackson’s physical differences?
JG:
I love when children notice Jackson’s glasses or his wheelchair and ask about it. It's okay to notice the differences and it's okay to talk about it. Please don't hush your child; instead talk about what is different, talk about what is the same, and encourage them to make a new friend.

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MTEAM: What key changes would make this a more inclusive world for medically complex children?
JG:
For me, inclusion is huge! Including Jackson in everything makes the difference for me. My heart breaks when he can't play on the playground, not because of his disability, but because of the way the playground was made and designed. My heart just about bursts when we go to an all abilities playground and he can play just like all the other kids or when we find a way to include him, no matter what it is. All parks, children’s museums, etc, should be made and designed for ALL abilities. This means having activities that a child who uses a wheelchair can do and play with, having ramps close to the stairs, not down the street. When all abilities are remembered and accounted for, that makes a difference! 

MTEAM: Share a memory of one of the times you’ve been especially proud of Jackson.
JG:
Just this past year Jackson has come so far! My husband was laying by him and saw Jackson cover his eyes and thought, is he playing peek-a-boo? My husband started saying, where's Jackson? And he started playing and having so much fun! Since then he sings interactive songs, does pound it and high-fives. You can ask him what a dinosaur says. He's sitting so much taller, pulling himself up on lower furniture and making so much progress. I'm so proud of him for constantly trying, working hard, for being happy no matter what life throws at him and for not giving up. He tries and he tries and he tries. I think he teaches us more than we teach him.

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