Mixing Advocacy With Travel in Washington, DCGuess 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...reactionscomments
Can a Non-Disabled Counselor Be a Good Fit For Me?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...reactionscomments
Disability and AbuseBy 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...reactionscomments
The Bully In My MindFor 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...reactions4comments
Let’s Talk About Mental HealthHow 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...reactions1comment
Coping as a Young Adult With SMAWe 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...reactions6comments
An Open Letter To My Mom, My CaregiverAs 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...reactions2comments
On Being Told To Live Independently“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...reactions1comment
Genetic CounselingI 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...reactions1comment
Using Your Disability to Impact LivesThe 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...reactions1comment
Finding Humor in the SMA-PCA BondLiving 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...reactions1comment
Personal GrowthBeing 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...reactions2comments
Getting Back In the Pool After Surgery With SMAHaving spinal muscular atrophy (SMA) means relying on a powered wheelchair for mobility. While my wheelchairs and assistive gear offer a sense of freedom, nothing beats the sheer delight of...reactionscomments
Art and SMA12 artworks in 7 months. In Nelson Mandela's words, “It always seems impossible until it’s done”. Who would’ve thought I managed to paint these? I make art for a living...reactions1comment
Pros and Cons of Owning an Accessible VanI feel as though having a disability is a constant balancing act of freedom and cost. Owning an accessible van can be a ticket to freedom for many with mobility...reactions6comments
Why Are Car Repairs So Expensive?Maintaining a reliable vehicle is vital for individuals living with spinal muscular atrophy (SMA) to maintain their independence and overall well-being. Unfortunately, vehicle repairs can often be a financial burden...reactions1comment
Social Media and Mental HealthSocial media can be a game changing tool for anyone, especially people in the SMA and disabled communities. I've chatted about this before – it allows homebound individuals to make...reactions4comments
Getting Out Of My HeadI know that I am not alone in this feeling. We ‘SMAers’ are very observant wallflowers. Meaning that we see everything. For me, this has helped me to survive when...reactions2comments
My Ewok CompanionIn the vast and colorful world of dog adoption, there are countless tales of furry companions who found their forever homes. These stories often involve the rescue of dogs from...reactions1comment
The Joy of Finding My Four-Legged SupportLife has its moments – some challenging, some joyful. As a full-time electric wheelchair user with limited arm mobility due to spinal muscular atrophy, I've experienced my fair share of...reactions1comment
