Modifying Your Home for More IndependenceHaving an accessible home can help with some of the challenges of living with SMA. It can help with living more independently...reactionscomments
Now Closed: SpinalMuscularAtrophy.net GiveawayThe SpinalMuscularAtrophy.net Giveaway is now closed. Thank you for your interest! We're excited to announce a special giveaway for our community! We...reactionscomments
The Joy of the MDA Summer CampI think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week...reactionscomments
Remembering the First DaysAs you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day...reactions1comment
The Journey BeginsI am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved...reactionscomments
Introduction to MDA and My Son's Diagnosis JourneyAfter waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist...reactions1comment
Learning From a Fall: Safety Tips for Wheelchair UsersThe other day, I fell out of my wheelchair. It’s not the first time this has happened, but it was definitely the...reactionscomments
Parking Lot Mishaps: The Wheelchair EditionWe've all witnessed that mom clutching her child's hand like it's a lifeline as they navigate a chaotic parking lot. This could...reactions2comments
Managing Fear in SMAOne of the topics I see covered a lot by parents of young people with SMA is the fear that they are experiencing...reactions3comments
Fears of the BiPAPLiving with spinal muscular atrophy, you'll often find yourself consulting a pulmonologist from a young age. Over the years, there have been...reactions1comment
My Experience With Massage Therapy and SMAI wrote an article talking about the benefits I have been experiencing from stretching. I also had a long run at receiving...reactions2comments
Transitioning to My First Electric WheelchairI’ve been using my new Permobil wheelchair for just about a month now. The last few months that I was using my...reactions2comments
The Importance of StretchingBeginning in my early 30’s, SMA started to take away a lot of my strength. As a result, I began sitting more...reactionscomments
Feeling Emotional About Things People SayI gave up whenever someone asked, “Oh, what is she doing now?" (She as in me.) And your family answered it with...reactions3comments
Patronizing CommentsI was on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment...reactions2comments
The Silent Battle and ResilienceIt’s a bittersweet reality when the person who has always been your guiding light becomes the one needing care themselves. In August...reactions1comment
How I Find Worth in CaretakingTaking care of someone can be hard and trying. Especially when it is a 24/7 gig. There are days I wish I...reactionscomments
Challenges of Being Your Partner's Full-time CaregiverCaring for a loved one with a disability like spinal muscular atrophy can be both a rewarding and challenging experience. One of...reactions1comment
Why am I Always the Party Pooper?I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and...reactionscomments
Thanksgiving & Difficulty SwallowingSo, the fourth Thursday of every November in the US is Thanksgiving. For our international friends, it is a national holiday centered...reactions1comment
