Accessible Getaway TipsWe asked our Health Leaders for some summertime advice: Do you have a summer vacation or getaway planned? What makes for the...reactionscomments
Escaping the Cold WintersMike and I are thinking about embarking on another road trip soon. These Pennsylvania winters are so hard on Mike in his...reactionscomments
Cure SMA Conference TipsI went to the Cure SMA Conference for the first time when I was 10 with my mom, dad, and grandparents (my...reactions1comment
Traveling and SMATraveling has always been a passion of mine. When I was younger I was fortunate enough to travel to Costa Rica, Guatemala...reactionscomments
Self-Care RoutineWhen I first began to read blogs and see posts about others doing their “self-care,” I remember my first thought: “Well I...reactionscomments
Needing Speech Therapy With SMARecovering from my kidney stone removal didn’t go as planned. I expected some discomfort, but I never anticipated the complications that followed...reactionscomments
SMA Treatment AdvancementsWe asked our team of advocates: What have advancements in treatment for spinal muscular atrophy meant to you?Allie: The celebration of life...reactionscomments
Advice for Younger People with SMAWe asked our team of advocates: What advice do you have for younger people with SMA?Allie: Learn how to adapt what you...reactions2comments
Finding HopeIt broke my heart when one of my good friends' daughters was diagnosed with SMA. The diagnosis was tentative, as he was...reactionscomments
Hope for the New YearIt’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new...reactionscomments
Learning the Hard Way: Ensuring Safety for Students with DisabilitiesWhen I was in school, I had a personal aide who accompanied me every day and followed me through several grades. She...reactionscomments
Can a Non-Disabled Counselor Be a Good Fit For Me?As a wheelchair user, I've navigated many paths—-some smooth, some fraught with obstacles. Yet, one of the most transformative journeys I've embarked...reactionscomments
Becoming MeAlthough we are only a few months into the year, as I write this, I've learned so much. About a week ago...reactionscomments
My Journey to BiPapTwo years ago, I was hit with some bewildering symptoms. A loud roaring noise invaded my left ear during a visit to...reactionscomments
Thriving With SMAIf you live with SMA, then you know the ‘waiting for the other shoe to drop’ mentality. I lived there for a...reactionscomments
Needing My Husband's Help in a Public RestroomI can honestly say some of my funnier moments coping with spinal muscular atrophy have come from having to use public restrooms...reactions1comment
Tips on Dating with a DisabilityI know every person‘s story is different, but the common denominator is the desire to be loved in most people's lives. As...reactionscomments
Eating OutAs I’ve gotten older and my disease, spinal muscular atrophy, has progressed a little more, eating out started to become more of...reactionscomments
The Art of Chewing and Swallowing with SMAIf you’ve lived with spinal muscular atrophy for any length of time you expect to have weakness progress in your body. However...reactions3comments
Wheelchair Accessible Seating HacksWho has dealt with the frustration of securing wheelchair-accessible seats? It can be a pain in the neck sometimes. Over the years...reactions3comments
