Building a Wheelchair-Accessible Home With SMA...After years of searching, I finally found a home builder for a new development that was more than willing to accommodate my...reactions10comments
Eating with SMA...Sitting down and sharing a meal with family and friends is one of the most basic social things to do. I love...reactions1comment
Performing on the Stage With SMA...The bright lights of Broadway have long been a beacon for dreamers, a symbol of passion, talent, and hard work converging to...reactionscomments
Making Sacrifices or Accommodating Each Other...Relationships are all about give and take. We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate...reactionscomments
Sorry To Miss The CureSMA Conference...I really wanted to go to The CureSMA Conference a recent year! I have no idea why Mike didn’t sign us up...reactions3comments
Accessible Getaway Tips...We 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 Winters...Mike 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 Tips...I went to the Cure SMA Conference for the first time when I was 10 with my mom, dad, and grandparents (my...reactions1comment
Traveling and SMA...Traveling has always been a passion of mine. When I was younger I was fortunate enough to travel to Costa Rica, Guatemala...reactionscomments
Self-Care Routine...When 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 SMA...Recovering 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 Advancements...We 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 SMA...We asked our team of advocates: What advice do you have for younger people with SMA?Allie: Learn how to adapt what you...reactions2comments
Finding Hope...It 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 Year...It’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new...reactionscomments
Respiratory Care and Ventilation for Spinal Muscular Atrophy...People with spinal muscular atrophy (SMA) have progressive muscle weakness. Chest muscles that support breathing are often especially affected. This can lead...
Learning the Hard Way: Ensuring Safety for Students with Disabilities...When 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 Me...Although 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 BiPap...Two years ago, I was hit with some bewildering symptoms. A loud roaring noise invaded my left ear during a visit to...reactionscomments
