Spotlighting Spinal Muscular Atrophy Community Members

In observance of Spinal Muscular Atrophy (SMA) Awareness Month in August, we connected with members of our SMA community to showcase some important insights about life with SMA. Discover their responses below:

IMG_5081 - Liz Persaud

 

Liz Persaud 

SMA is considered a childhood neuromuscular disease, but there are many of us living well into our 40s, 50s, 60s and longer. As time goes by, science and technology are making our lives easier every day and extending the possibility of a longer life. However, those of us that are older with SMA encounter other medical obstacles, just as those do that don’t identify as disabled... As a direct result, our self-advocacy skills become stronger and louder. We aren’t going anywhere and it’s about time the medical field and the rest of the world recognizes that!”   

 

Tyler Dykema

 

Ty Dykema 

Ty Dykema is a freelance visual artist in Grand Rapids, Michigan. He says that although SMA can be “an incredibly brutal thing to live with,” it also provides him with a beautiful way to connect with others.  “Learning to see my needs as opportunities for human connection changed the way I see myself and my community for the better,” he said.   

 

 

Jensen CaraballoJensen Caraballo

“Universal Design not only benefits individuals with disabilities, but it also enhances the quality of life for everyone, creating a more inclusive and equitable society,” he said. “By embracing these principles, we can eliminate many of the barriers that currently hinder our full participation and engagement in various aspects of life. It's a step towards a world where everyone can thrive and contribute their unique perspectives and talents.”  

 

IMG_3864 - Michaela Hollywood

 

Michaela Hollywood 

Michaela wants others to know about the unique intersections of mental health and physical disability. “The one thing I think we all neglect is the mental health impact of needing to have almost constant companionship,” she said. She also pointed out the stress caused by care arrangements being unstable, due to illness or other situations.   

 

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Ali Ramos

 

Ali Ramos

Lived experience is oftentimes greater than a formal education,” she said. “The inaccessibility of the mental health field is prevalent now more than ever.”  

When asked what would make life more accessible for her, Ali emphasized the need to be able to travel by plane without fear of her wheelchair or body being hurt. “I can't even imagine getting to fly somewhere safely and comfortably while remaining seated in my wheelchair,” she said. “That would be amazing!” 

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 exploring resources available here.

About the Author - Reeve Staff

This blog was written by the Reeve Foundation for educational purposes. For more information please reach out to information@christopherreeve.org

Reeve Staff

The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $10,000,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, ACL/HHS, or the U.S. Government.