My Journey With EvrysdiHi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision...reactionscomments
Comparing Spinraza and Evrysdi: Things to ConsiderIf you are taking Spinraza® (nusinersen) for spinal muscular atrophy (SMA), then you may be curious about Evrysdi® (risdiplam). Both therapies are...reactionscomments
My Spinraza ExperienceI just want to remind everyone that their medical journey will be different from everyone else’s. I share this story in hopes...reactionscomments
Red OctoberAny sports fan in the Philadelphia area will understand the phrase Red October. For those of you who are not lucky enough...reactionscomments
Adapting and Fitting InWe all want to fit in. What does that look like? Who do we want to be? I believe that everyone deals...reactions2comments
A Family AffairI have been writing about my spinal muscular atrophy journey for a few years now. I often wonder who out there is...reactions2comments
Traveling with SMAWhen it came to my level of independence, I have been pretty lucky. An area of my life that was always a...reactionscomments
Trying to Experience an Inaccessible WorldI have so many stories to tell regarding this topic. I have talked about how lucky I consider myself in previous articles...reactions3comments
Maintaining Friends While Living With a DisabilityThis topic recently came up while talking with other writers from this page. I am very outgoing and have always loved being...reactions3comments
The Awkward GreetingA few weeks ago Suzanne and I went out to dinner with friends of ours to a new restaurant. We arrived first...reactionscomments
Why is He in a Wheelchair?"Why is he in a wheelchair?" If I had a dollar every time I heard that phrase, I would be rich. I...reactionscomments
Overcoming ObstaclesWhat has been the biggest obstacle that you have overcome with SMA? What was your greatest challenge and how did you get...reactionscomments
Talking With Children Who Have SMA About Their BodyI remember being a child and having very bold discussions with health care providers regarding my weight. Their focus was a clinical...reactions6comments
SMA Mama – Preconception, Pregnancy, and PostpartumI have spinal muscular atrophy (SMA) type 3. I’m unable to stand, walk, or transfer. I use a manual wheelchair and power...reactionscomments
What Is an Accessible Home? I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100%...reactionscomments
Building a Wheelchair-Accessible Home With SMAAfter years of searching, I finally found a home builder for a new development that was more than willing to accommodate my...reactions10comments
Eating with SMASitting 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 SMAThe 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 OtherRelationships 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 ConferenceI really wanted to go to The CureSMA Conference a recent year! I have no idea why Mike didn’t sign us up...reactions3comments
