Mental Health Check...May is mental health awareness month, a time to increase awareness of the importance of mental health and wellness. How are you...reactionsrepliesMental Health
Genetic Counseling...I was born in the 1970s and, while genetic counseling started in 1969, it wasn’t what it is today. There was no...reactions1comment
Using Your Disability to Impact Lives...The beauty of sharing our stories lies not just in the telling, but also in the impact they can have on others...reactions1comment
Finding Humor in the SMA-PCA Bond...Living with spinal muscular atrophy (SMA) feels like riding a rollercoaster of emotions, but having my lifeline, also known as my personal...reactions1comment
Personal Growth...Being born with a genetic disorder like spinal muscular atrophy forces us to adapt to a world that wasn’t built for disabled...reactions2comments
Getting Back In the Pool After Surgery With SMA...Having spinal muscular atrophy (SMA) means relying on a powered wheelchair for mobility. While my wheelchairs and assistive gear offer a sense...reactionscomments
Art and SMA...12 artworks in 7 months. In Nelson Mandela's words, “It always seems impossible until it’s done”. Who would’ve thought I managed to...reactions1comment
Navigating the Pros and Cons of Owning an Accessible Van...I feel as though having a disability is a constant balancing act of freedom and cost. Owning an accessible van can be...reactions10comments
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...reactions1comment
Social Media and Mental Health...Social media can be a game changing tool for anyone, especially people in the SMA and disabled communities. I've chatted about this...reactions4comments
Getting Out Of My Head...I know that I am not alone in this feeling. We ‘SMAers’ are very observant wallflowers. Meaning that we see everything. For...reactions2comments
My Ewok Companion...In the vast and colorful world of dog adoption, there are countless tales of furry companions who found their forever homes. These...reactions1comment
Support Animal...Do you have a support animal/pet? What do you love about them? Would you recommend a support animal for other SMA patients?...reactions1replyTips & Advice
The Joy of Finding My Four-Legged Support...Life has its moments – some challenging, some joyful. As a full-time electric wheelchair user with limited arm mobility due to spinal...reactions1comment
Grieving Over a Spoon and Fork...Who would've known that a seemingly simple pair of utensils could carry such emotional weight? The other night, my sister invited us...reactions1comment
"Most Likely Not To…" The Musical!...On February 29th, 2024, The Times Center officially hosted the first-ever SMA musical in collaboration with SMA My Way and Genentech! I...reactionscomments
Self Advocacy...Do you consider yourself an advocate for yourself? If so, how did you start advocating? How has it impacted your life with...reactions1replyTips & Advice
The Importance of Wearing Your Seatbelt with SMA...In my younger days, donning my belt each morning was a steadfast ritual. It was something I did everyday, like brushing my...reactionscomments
The Gift of Self-Advocacy: Teaching Kids To Use Their Voice...Growing up with spinal muscular atrophy (SMA), I've had the privilege of witnessing the remarkable impact of my parents' guidance in teaching...reactions5comments
If I Knew Then What I Know Now...When I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to...reactions4comments
