Rapid advancements in FDA-approved treatments have improved the quality of life for people living with spinal muscular atrophy, but societal barriers remain.
Spinal muscular atrophy (SMA) is a genetic neurodegenerative disease that robs people of physical strength, impacting their ability to walk, eat, and breathe. Due to muscle weakness, many people with SMA use power wheelchairs.
Three FDA-approved treatments have gone to market since 2016, greatly improving outcomes and providing new hope for people living with SMA. Additionally, 98% of newborns in the United States are now screened for the disease at birth. While this medical progress is immense, roadblocks in society persist.
“Besides the physical side of SMA, the emotional aspects have evolved over the years,” shared Brad Nunemaker, a member of the Cure SMA board. “Anxiety about the unknown — will I have any issue getting into a new building, will I be able to get into a friend’s house, will it be hard for me to get up from my seat at the restaurant — are always present.”
Through continued advocacy and awareness among the general public, members of the SMA community are hopeful of change.
“The system doesn’t work in our favor.”
Many adults with SMA utilize Medicaid for care services such as in-home aids to assist with basic tasks or physical therapy, in addition to other home- and community-based services. However, income and asset limits that exist in some state programs force individuals with SMA to choose between a meaningful career and independence.
“I didn’t realize this was a problem until I grew up,” shared 26-year-old Janelle Fiesta of Hawaii. “When I found out about the $2,000 asset limit, I was like, ‘How am I ever going to buy a house or pay for a car?’”
Janelle is currently employed at the U.S. Navy’s Equal Opportunity Office and operates a small business, Cute Loot Arts. She is still figuring life out but feels proud of what she has accomplished and is capable of expanding her horizons.
“I want to learn to drive my own adaptive vehicle, I want to move out, I want to be able to start a family with my partner,” said Janelle.
“I know my rights as a disabled person on a flight.”
Air travel can be stressful for anybody. For those with SMA, the chance of an airline losing or breaking their wheelchair adds additional anxiety.
In 2007, an airline broke Allie Williams’ wheelchair to the tune of $20,000 in damages. It took eight months to fix. In that time, she lost so much function and movement that she could no longer do her makeup, something she cherished.
Nearly 15 years later, thanks to a new treatment, Allie has once again mastered the art of makeup, and with the support and encouragement of friends and family, she also returned to air travel.
“I know my rights as a disabled person on a flight, and I really think that’s important,” she said.
Self-advocacy, as Allie describes it, is equally important. While there is a strong need to be able to use power wheelchairs on aircrafts, asking for proper accommodations and stating your needs helps alleviate confusion in the meantime.
“I’ve taken extra precautions for my chair. I have a piece of paper on there with my picture, because I want them to put a face to it. I say, “Thank you for taking care of my legs,” and I put an air-tag on my wheelchair so I know that it’s on the plane when we take off.”
“It gave the kids an opportunity to connect on a deeper level.”
In December, 12-year-old Brady Chan organized neighborhood bake sales with a group of his sixth-grade friends to benefit SMA research and support programs. The kids planned every detail, had a taste test, and connected about the importance of raising critical funds.
“Brady still kind of struggles with educating others about SMA. He would much rather drive away and avoid the topic. This was the first time he’d faced it straight on and talked about the disease that he lives with and how the organization Cure SMA has helped him,” shared his mom, Mimi Chan.
“It gave the kids an opportunity to connect on a deeper level and to have a better understanding of what Brady lives with. It brought them closer.”
Not only did the kids raise over $64,000, they also made a new connection with another local family affected by spinal muscular atrophy.
A common thread amongst Nunemaker’s, Fiesta’s, Williams’, and Chan’s stories is one of belonging. “Reach out to others and connect. It’s easy to feel isolated or that others don’t understand what you’re going through; we are meant to build relationships and share our stories with other people,” emphasized Janelle.
