My Son's Own Apartment: Adapting Our Home as SMA ProgressedWhen we moved into our new home in 1988 we had an apartment included for Grandma. In 2000 she decided to move...reactionscomments
Wheelchair Recommendations and Favorite FeaturesAs someone with spinal muscular atrophy, I understand the importance of selecting the correct wheelchair. Not only is it a huge financial...reactions3comments
SpinalMuscularAtrophy.net GiveawayWe'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 VoiceI 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 SMALiving 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 PrideEveryone 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 CompareIf 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 NeedsSelf-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 SMAThe time of year is upon us when the temps are dropping, the holidays are approaching and the terrifying “F” word is...reactions1comment
How to Talk to Your Child With SMA About Body ImageI 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 PollsFor 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 AtrophyI 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 HomeThe 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 Reduced2025 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 SMAThe 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
Art and SMA12 artworks in 7 months. In Nelson Mandela's words, “It always seems impossible until it’s done”. Who would’ve thought I managed to...reactions1comment
How Public Accessibility Unlocks Independence for People with DisabilitiesAccessibility and independence go hand-in-hand but often times people do not realize that they rely on each other. I have spoken with...reactions7comments
Recognize and Prevent Abuse of People With DisabilitiesBy definition, abuse is something that inflicts pain or emotional distress on a vulnerable person through verbal or nonverbal acts. Abuse thrives...reactionscomments
Navigating the Dating Scene When You Have SMAThe dating landscape with social media and dating apps is not always an ideal way to meet others when you have a...reactions2comments
