I Was a Guinea Pig...In the 1990s, I found myself unwittingly becoming a pioneer in the quest for advancements in SMA care. As a person living with spinal muscular atrophy (SMA), the landscape of...reactions1comment
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, I decided to get rid of, by unsubscribing...reactionscomments
Valentine's Day and SMA...The holidays always bring their own set of challenges, and Valentine’s Day is no different for me. Throughout my life, I've never dated anyone, but I still hold onto the...reactions3comments
Teaching Your Kids About Disabilities...From a very young age, I've been intimately familiar with the world of disabilities. Diagnosed with SMA type 2 at just 18 months, I entered the public school setting as...reactionscomments
Independence & SMA...What would complete and total independence look like for you? How would you describe it? Do you have small every day wins that help you feel independent? Join the conversation....reactions3repliesTips & Advice
Rocking the Solo Life...Well, folks! It's been a wild ride – a decade of liberation from marriage and an interesting tango with spinal muscular atrophy (SMA). Who needs a partner when you can...reactions1comment
Worst Case Scenario: a Cold...*This article was inspired by Balancing Life When You Are Ill by Michaela Hollywood* As of writing this, I was sick this past Thursday and then finally felt better today...reactions1comment
FeaturedTips for Cold/Flu Season...Getting sick is no fun! What're some tips and tricks you have to survive cold and flu season?...reactions4repliesTips & Advice
Will you take our In America survey and help others understand the true impact of SMA?...The In America survey is now closed. To better understand the patient experience and realities of SMA, we are fielding our SMA In America survey. By taking this anonymous survey...reactionsrepliesAwareness
What A Small Cold Can Do...In October, my mom caught a little cold during a trip to her doctor's office. She suffered a sore throat, cough, runny nose, and a mild migraine for about four...reactionscomments
Getting Creative: Lack of Assistive Equipment...Do you have any recent experiences of having to get creative when there is a lack of assistive equipment, or your circumstances don't allow you to access the equipment that...reactions5repliesAssistive Equipment
My Battle With Chronic Pain and SMA...In my life, aches and pains have been constant companions. In my younger years, I chalked them up as part of the growing-up process with SMA, something we all had...reactions1comment
The Evolution of Adaptive Showering Equipment...Many people with disabilities, like spinal muscular atrophy, may struggle with self-care necessities, especially bathing/showering when access is hard. My situation was no different, and I want to describe the...reactions2comments
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. I’m still so mad at him! Why on...reactions3comments
Struggling to Find the Right Fit...It can be frustrating shopping for clothes that fit my body comfortably, especially dress clothes. I am at an age now where I am getting out of always wearing sweatpants...reactions1comment
Overwhelmed...Last year, to make a long story short, I had a bunch of GI issues. The GI team decided to give me a peg tube. I want to be friends...reactions2comments
Tips for a Successful Night Out as a Wheelchair User...Going out can be nerve-wracking for anyone, but when you're a wheelchair user with spinal muscular atrophy, the stress can multiply. From accessibility concerns to dealing with a crowd of...reactions3comments
New Year - New Me?...I never liked the phrase "new year, new me." It made me feel like everything I did last year was thrown away, and none of it mattered. What's wrong with...reactionscomments
Friends That Travel Together, Stay Together...People say travel friendships can last a lifetime. With traveling, it shows how solid your friendships are because you will know how they are through day and out. Just like...reactionscomments
Getting Ready in the Morning...Getting ready in the morning when you have spinal muscular atrophy (SMA) can be challenging because of the lack of strength and inability to move much, but with a little...reactionscomments
