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
When My Wheelchair Stopped Feeling Like HomeFor many people with spinal muscular atrophy (SMA), a wheelchair is more than a piece of equipment. It’s an extension of the...reactionscomments
How to Cope When Your Child Is Diagnosed With SMAA child’s diagnosis of spinal muscular atrophy (SMA) can be a life-changing event for parents. Parents say they feel a range of...reactions3comments
My Son's Own Apartment When we moved into our new home in 1988 we had an apartment included for Grandma. In 2000 she decided to move...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
What to Consider When Choosing Between Spinraza and EvrysdiIf you are taking Spinraza® (nusinersen) for spinal muscular atrophy (SMA), then you may be curious about Evrysdi® (risdiplam). Both therapies are...reactionscomments
How I Protect My Physical and Mental Health with SMALiving with spinal muscular atrophy (SMA) causes a toll on your mental and physical health on a daily basis. You learn to live...reactionscomments
My Experience with Wheelchair Joystick GripsLiving with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that...reactions1comment
Summertime With SMAGood old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to...reactionscomments
What an Interabled Relationship is Really Like: A Perspective on SMA and LoveLove knows no boundaries, and when it comes to interabled relationships, it is no different. Mike and I are in an interabled...reactionscomments
A Guide to Disclosing SMA to Your EmployerTalking to an employer about spinal muscular atrophy (SMA) can be scary. But many people find that open communication with their employer...reactionscomments
