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
Talking to an Employer About SMATalking to an employer about spinal muscular atrophy (SMA) can be scary. But many people find that open communication with their employer improves their work life. For example, your employer...Reactions0reactionsComments0 comments
The Journey BeginsI am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved one diagnosed with a disease, it affects the...Reactions0reactionsComments0 comments
Coping With Your Child’s SMA DiagnosisA child’s diagnosis of spinal muscular atrophy (SMA) can be a life-changing event for parents. Parents say they feel a range of emotions while waiting for a diagnosis and after...Reactions0reactionsComments1 comments
Clinical Trial GlossaryClinical trials have a language of their own. It helps to understand the common terms used when describing a clinical trial before you sign up. Here are some of the...Reactions0reactionsComments0 comments
Clinical Trial ParticipationClinical trials are medical studies that pose a question: Does a new treatment work better than older treatments? Each year, thousands of treatments are tested in controlled experiments called clinical...Reactions0reactionsComments0 comments
Understanding Clinical TrialsA clinical trial is a type of research. Research is the process scientists use to explain how our bodies work or why our bodies stop working well. Clinical trials are...Reactions0reactionsComments0 comments
