Navigating Early Intervention and EducationOur daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our...reactionscomments
A Trip to The Dentist with SMAI don’t think there’s anyone that actually enjoys going to the dentist. Now, mix in the fact that this could be quite...reactionscomments
Sibling LoveI have talked about Mike’s good friends who were always including him with all their adventures. Well, the best friend of all...reactionscomments
A Difficult Decision About Scoliosis Surgery For Our DaughterIn the 1980s, my daughter who had spinal muscular atrophy (SMA) was growing bigger and taller. We noticed that she was having...reactionscomments
What I Would Tell My Teenage SelfI’m approaching my 33rd year of life, and as I reflect on my younger years, I remember thinking I had it all...reactionscomments
The Administrative Bent of People with SMAWhy we make great leaders, parents, and executives: If you were born in the last 40 years, there’s a good chance that...reactionscomments
The Misery of Accessible House HuntingSearching for a dream home or apartment is a daunting task and even more so for a person with a disability. There...reactions1comment
Bullying on Social MediaSocial media has opened up a wealth of connections and information to people all over the world and is an important access...reactionscomments
My COVID ExperienceYou’ve heard the saying “the fear of the unknown.” I would not consider myself a fearFULL or pessimistic person however when COVID...reactionscomments
The Expense of Maintaining a Power ChairI know I have mentioned this before but it’s worth repeating. Having a disability is expensive. It’s one of the aspects of...reactions1comment
Finding the Correct Treatment JourneyWhen we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best...reactions1comment
Coming Up With A Treatment PlanRecently this topic was suggested to me and to be honest, I have sat with my feelings on this for quite some...reactions2comments
SMA and Snow Days I don’t think I am alone when I say that winter is just not our favorite season. I tend to run cold...reactionscomments
Adaptive Equipment for Jessie: Providing Medical, Educational, and Social SupportBack in the 1970s, we found out that our daughter, Jessie, had spinal muscular atrophy [SMA]. A respected doctor told us that...reactionscomments
Finding the Right Healthcare TeamThere are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges...reactionscomments
Hope is The WordReliving our family stories brings back many memories of my son's journey with SMA. The emotions felt were painful, inspirational, scary, hurtful...reactions3comments
Managing Appointments for SMASpinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of...reactionscomments
The Power of ResearchFor those of us living with SMA, these are exciting times when it comes to research and FDA-approved treatments. I’ve always been...reactionscomments
A Young Man’s Social YearsEvery parent can relate to those years of watching your adult child living those carefree years after college, beginning their working careers...reactionscomments
New Year, New CareWhen the New Year rolls around, everyone reflects on the previous year and sets goals for the new one. For those of...reactionscomments
