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...Living with spinal muscular atrophy (SMA) brings its own set of challenges. Some challenges are glaringly obvious. Others play out behind the scenes. Growing up, I didn’t really care much...

...By its very nature, caregiving can take an emotional and physical toll on your health. If your child has spinal muscular atrophy (SMA), you may feel added stress and worry...

...I was about 4 years old when my parents became concerned about my physical well-being. My younger brother was becoming stronger than me, and this alerted my parents that something...

...Guess what I did? I took a trip to Washington, D.C., to advocate for a cure for spinal muscular atrophy (SMA) on Capital Hill. It was an incredible journey, but...

...As a wheelchair user, I've navigated many paths—-some smooth, some fraught with obstacles. Yet, one of the most transformative journeys I've embarked on is not one that required physical navigation...

...By definition, abuse is something that inflicts pain or emotional distress on a vulnerable person through verbal or nonverbal acts. Abuse thrives in shame and silence. It is based on...

...For me, personally, the smallest things are the scariest. I know that you just have to do it, as they say, but I guess the not knowing is the worst...

...How do you find yourself managing your mental health on a day-to-day basis? Please join the conversation. Below are comments from SpinalMuscularAtrophy.net community members on how their own life with...

...We asked a couple of our young Health Leaders, Kellie and Jennifer, about the transition from their teenage years to adulthood, how they are coping with responsibility for their own...

...As Mother’s Day approaches, I find myself reflecting on all the things my mom has done for me since I was diagnosed with spinal muscular atrophy (SMA). Caring for someone...

...“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone” “You should learn how to cook. At least fry some eggs. If...

...I was born in the 1970s and, while genetic counseling started in 1969, it wasn’t what it is today. There was no known history of any kind of muscular dystrophy...

...The beauty of sharing our stories lies not just in the telling, but also in the impact they can have on others. My recent journey to a different state for...

...Living with spinal muscular atrophy (SMA) feels like riding a rollercoaster of emotions, but having my lifeline, also known as my personal care assistant (PCA), adds some much-needed comedy and...

...Being born with a genetic disorder like spinal muscular atrophy forces us to adapt to a world that wasn’t built for disabled people. As a child, we experience this from...