Living with Spinal Muscular Atrophy
Happy Spinal Muscular Atrophy Awareness Month! 
SMA is a genetic, neuromuscular condition that impacts voluntary muscle movement. There are four types of SMA with varying levels of severity – when I was diagnosed at 16 months, SMA types were determined by onset of symptoms and thus diagnosis age. Now, with the ability to diagnose in utero, types of SMA are determined using different guidelines, including specific gene details and impact of symptoms.
This isn’t the only way lives have changed as technology progresses. Although it was once considered a childhood disease, people with SMA (like myself!) are now living longer thanks to the advancements in technology and treatments.
Like all people, we live varied, unique lives – some of us use wheelchairs, some of us walk. Some of us want a cure for our condition, others want a more accessible world (many of us want both). We are artists, scientists, therapists, lawyers, performers, teachers. We are Content Specialists and Directors of the Outreach and Education Department of the National Paralysis Resource Center!
As part of SMA Awareness Month, we’re featuring Spotlights of Community Members with SMA, read our full blog here. I asked individuals to submit answers to three questions – find my own answers below!
Join Our Movement
What started as an idea has become a national movement. With your support, we can influence policy and inspire lasting change.
Become an Advocate
What is one thing you wish people were more aware of related to SMA?
People living with SMA require the support of personal care assistants to live and thrive. Many of us require complex care, and yet, these home- and community-based supports are not always covered by Medicaid to the extent that we need. As people with SMA live longer, more and more of us need this support. We deserve to live full, rich lives in our communities, and we need caregivers to do so.
What is one thing you love about your community?
The creativity that disabled people rely on to survive and the ways that allows for new realities and futures.
What is one thing that would make life more accessible for you?
Virtual access to all events. We saw an increase in virtual options with the onset of COVID, but many of these options are no longer available. Whether someone is unable to travel, arrange their care for an in-person event, or is at risk for COVID and other illness, hosting events that don’t off remote access ensures a population of disabled people will be unable to attend. We can ensure greater access in all realms of society by prioritizing virtual options from the beginning.
SMA and the National Paralysis Resource Center
Despite common perceptions, the term paralysis applies to more conditions than just Spinal Cord Injury. The National Paralysis Resource Center uses the definition of paralysis provided by our funder, the Administration on Community Living: any sort of mobility impairment. This means that conditions like Spinal Muscular Atrophy fall under the paralysis umbrella, and that people with SMA qualify for services through the NPRC.
Learn more by visiting our page on Spinal Muscular Atrophy and explore our National Paralysis Resource Center resources available here.
Author's Bio: Hannah Soyer is the Outreach & Education Content Specialist at the Christopher & Dana Reeve Foundation.