My Son's Own Apartment: Adapting Our Home as SMA Progressed...When we moved into our new home in 1988 we had an apartment included for Grandma. In 2000 she decided to move...reactionscomments
Treatments for Spinal Muscular Atrophy...Most treatments for spinal muscular atrophy (SMA) are supportive therapies. They may delay or prevent complications and improve quality of life. The...
Disease-Modifying Drugs for Spinal Muscular Atrophy...Spinal muscular atrophy (SMA) is a disease that makes muscles weak over time. It happens when the body cannot make enough of...
Who Treats Spinal Muscular Atrophy?...People with spinal muscular atrophy (SMA) require ongoing, specialized care from a team of doctors and other health specialists. The team is...
Wheelchair Recommendations and Favorite Features...As someone with spinal muscular atrophy, I understand the importance of selecting the correct wheelchair. Not only is it a huge financial...reactions3comments
SpinalMuscularAtrophy.net Giveaway...We're excited to announce a special giveaway for our community! We understand the challenges that come with accessibility and SMA, and our...reactionscomments
From MDA Summer Camp to CureSMA: How I Found My Community and My Voice...I was five years old when I met someone else who had spinal muscular atrophy (SMA). I met them at the Muscular...reactionscomments
Essential Items for Managing Daily Life With SMA...Living with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here...reactions3comments
SMA Awareness Month: Awareness or Pride...Everyone in the SMA community knows that August is our month... well, everyone except for me. I’m ashamed to admit I did...reactions4comments
Spinraza vs. Evrysdi for SMA: How the Treatments Compare...If you are taking Spinraza® (nusinersen) for spinal muscular atrophy (SMA), then you may be curious about Evrysdi® (risdiplam). Both therapies are...reactionscomments
Self-Advocacy: A Skill Every Person with SMA Needs...Self-advocacy is a skill that everybody needs at some point in their life. When you are dealing with a lifelong condition like...reactions6comments
Managing Cold and Flu Season with SMA...The time of year is upon us when the temps are dropping, the holidays are approaching and the terrifying “F” word is...reactions1comment
Community Team...Welcome to Health Union's Community Team. Our Community Team is made up of a diverse group of employees of Health Union who...
How to Talk to Your Child With SMA About Body Image...I remember being a child and having very bold discussions with health care providers regarding my weight. Their focus was a clinical...reactions6comments
Weight Management and Spinal Muscular Atrophy - Take Our Quick Polls...For people living with chronic health conditions, managing weight can be a particularly challenging task. Balancing the demands of managing symptoms and...reactionscomments
How Speech Therapy Helps Children With Spinal Muscular Atrophy...I am a speech pathologist. My daughter had spinal muscular atrophy. One of my daughter’s needs was speech therapy services. Since I...reactionscomments
How to Maintain Privacy with Around-the-Clock Care at Home...The other day I was in my home observing the business. I had two caregivers shuffling through my bedroom and kitchen, kids...reactionscomments
Feeling Overwhelmed with Caregiving Support Being Reduced...2025 stands out as one of the most challenging years of my life. I happily began the year sober, a feat that...reactionscomments
Navigating IEPs, 504 Plans, and School Accommodations for SMA...The United States government has many laws that protect rights to education for children with disabilities. Spinal muscular atrophy (SMA) is considered...reactions1comment
SMA and AI: How Are You Using It for Your Health?...Something has shifted in the last couple of years. A late-night symptom search now sometimes starts with an AI summary before it...reactionscomments
