Subscribe to Our Weekly NewslettersDo you want more information about spinal muscular atrophy? Are you looking for support? Do you want to talk to others affected by this condition? If you answered “yes” to...Reactions0reactionsComments0 comments
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, and mostly sadness. Over the years people (mostly...Reactions0reactionsComments2 comments
Asking for Medical Accommodations at Your JobHaving SMA and asking for help is unfortunately just a part of our disability. Although this may be difficult at times, we should never feel like a burden at home...Reactions0reactionsComments0 comments
A Walk With Someone NewYesterday, a friend invited me on a walk, because she is raising money by walking for a charity. We decided to walk on my street, which is a flat cul-de-sac...Reactions0reactionsComments1 comments
The Dreaded "What-If's"I’m a 44-year-old man living with spinal muscular atrophy type 3. Looking back now, I was pretty independent as a kid all the way through my late 20’s. Growing up...Reactions0reactionsComments0 comments
Interviewing for a Job When You Have a DisabilityInterviewing for a job can be a daunting task for anyone regardless of how physically or mentally capable you are. But when it comes to having a disability, this process...Reactions0reactionsComments1 comments
To Trach or Not to TrachThat is the question. Whether tis nobler... Despite that Shakespearean introduction, this is a serious topic that many of us will have to face if we have not already. Depending...Reactions0reactionsComments1 comments
Comparing Developmental Milestones of TwinsMy late wife Zelda was pregnant in 1974! This was our first pregnancy! Zelda was under the care of her obstetrician. She visited her doctor for all appointments. Everything was normal...Reactions0reactionsComments1 comments
The Frustration of "Inaccessible" Accessibility“Come visit this awesome new restaurant,” my friends begged me. “It’s got great Yelp reviews and we’ve wanted to visit it.” “This club has the best drinks and the friendly...Reactions0reactionsComments2 comments
How I Met MikeOne of the great things about little kids is that they have no filter. For example, when adults see someone with a physical disability, they usually politely avert their eyes...Reactions0reactionsComments1 comments
SMA and COVID-19Since late 2019, COVID-19 has become a household name. It has changed many aspects of daily life. Especially for those living with chronic conditions. "Quarantine," "social distancing," and "herd immunity"...Reactions0reactionsComments0 comments
How Expensive Is That Minivan?I want to talk about the extra expenses for anyone who deals with a physical disability. Dealing with the physical aspects of spinal muscular atrophy sometimes feels like a small...Reactions0reactionsComments4 comments
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 and the birth of each of our children...Reactions0reactionsComments1 comments
Finding the Right CaregiversLiving with a disability, I like to consider a full-contact sport. It requires your mind, body, and soul to be as healthy as possible. And in most cases, it requires...Reactions0reactionsComments0 comments
"When I’m an Adult, I Will Walk"Do ducks swim in their own pee? Are babies even real? Or just pretend? When I’m an adult, I will walk. This was all within 5 minutes of pulling into...Reactions0reactionsComments4 comments
SMA Awareness or Pride?Everyone in the SMA community knows that August is our month... well, everyone except for me. I’m ashamed to admit I did not know about SMA Awareness/Pride month until this...Reactions0reactionsComments4 comments
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 with this feeling of being left out at...Reactions0reactionsComments2 comments
Spinal Muscular Atrophy: Self-Care Tips for CaregiversSpinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of SMA depend on which type a person has...Reactions0reactionsComments1 comments
My Life with SMAIt all started here Mom was wondering why a bubbly little girl who can already speak at 10 months old cannot crawl but managed to sit. She skipped a few...Reactions0reactionsComments1 comments
Why I Love and Hate My G-Tube“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have no idea what I’m talking about or referring...Reactions0reactionsComments0 comments