Family impacted by FSHD fights back, one hop at a time

Dara Yoken couldn’t have been happier when she learned that her 3-year-old son Eli was going to jump around with his preschool classmates in the hope of helping MDA families like her own.

“We were thrilled to learn that Eli’s preschool class had chosen to host an MDA Hop – A – Thon since MDA is an organization that is near and dear to our hearts,” says Dara.

Hop – A – ThonHop-a-Thons teach preschool through second-grade children at day care centers, preschools and elementary schools about disability awareness, acceptance and assistance. After a week of learning, the kids count their hops during a timed event, helping them understand that the physical strength they are using can deteriorate among individuals living with muscular dystrophy and related diseases.

For Eli, this is a lesson he’s already learned. Dara’s mother, aunt and cousin all live with late-onset Facioscapulohumeral muscular dystrophy (FSHD) and Dara is a carrier of the FSHD gene. FSHD is a genetic muscle disorder that causes weakness in the face, shoulders and upper arms, but the disease can cause weakness in other muscles, as well.

Although Dara carries the FSHD gene, she is currently symptom free; however, she has seen the impact this disease has had on her mother.

“Watching my mom go through this is tough – it has been progressive and fast moving. I have seen her go from using a cane to using a rolling walker, and now she uses a wheel chair. It’s difficult for her to walk across the room without multiple breaks,” says Dara.

Hop – A – ThonDara shares that although only 3 years old, Eli has realized the impact FSHD has had on his Nana and is all the more motivated to raise money to help find a cure.

“In an effort to support Eli’s Hop – A – Thon, we created an online fundraising campaign and utilized social media and our personal network to raise money,” Dara says.

And of course, they had Eli’s excitement to fuel the fundraiser.

“Eli’s favorite part of the Hop – A – Thon was checking to see who had donated. He was excited to see what he had done and hopped very enthusiastically for 30 seconds at a time. He said ‘I’m doing this for my Nana, and I’m not going to give up.’ Eli understands that he was doing this to help others,” says Dara.

This year’s Hop – A – Thon was an undisputed success, with Eli’s school raising $3,000 for MDA. The Yokens have already committed to leading the charge for next year’s Hop – A – Thon, as well, with the hope of raising twice as much as they did this year.

Hop – A – ThonAside from raising money for FSHD research, Dara embodies the Live Unlimited spirit by using the strength she has to run and stay active for as long as possible.

“The daily challenges that I face pale in comparison to the obstacles that others defy on a daily basis, including my own mom, who I watch move mountains just to walk across a room,” Dara says. “However, I challenge myself to #LiveUnlimited by running endurance races. My goal is not to push myself too hard, run a marathon, or to win a medal; my goal is to stay healthy and to remind myself that this disease has not yet taken away my abilities or strength, and I will not let it do so willingly. My mother, aunt, cousin, among many others living with muscular dystrophy inspire me and are with me each step of the way. I will run and participate in road races as long as my body will allow, even if one day I have to crawl over the finish line!”

Help families impacted by FSHD and other neuromuscular diseases today.