Finding purpose and joy through the gift of volunteering
Volunteering has given me more joy and meaning than I ever imagined possible. Living with spinal muscular atrophy (SMA) means I can’t move my own body, but that hasn’t stopped me from finding…
Being Resilient — Jasmine Ramos
Jasmine Ramos is a junior at Millersville University of Pennsylvania. As a student involvement assistant at her community college, she’s managed the school newsletter, earning her the affectionate title of “newsletter queen.” Diagnosed with SMA type 1 at 6 months old, Jasmine hopes to connect with others through her column, sharing personal experiences with a rare disease. Between studying and crafting articles, she enjoys cozying up with a blanket while engrossed in psychological thrillers or true crime TV shows. Her journey reflects resilience and a commitment to raising awareness about lesser-known conditions.
Featured Post
The healing power of writing on my journey with SMA
Writing is a kind of magic — a spell woven with intention and purpose. It’s more than just a passion; it’s my superpower. I can bridge the gap between myself and the world through…
Read more
When the disabled needed a place to connect, I created one
As depression and anxiety started to affect my outlook on life, I noticed how these challenges clouded even the simplest moments. Depression’s weight often made it hard to see beyond a day’s struggles,…
Celebrating my 29th birthday in New York brought joy, nostalgia
Since I have spinal muscular atrophy (SMA), my birthday always demands a grand celebration. And this year was extraordinary. Not only am I closer to bidding farewell to my 20s, but I also…
Addressing 5 common misconceptions about disabilities
As those of us with spinal muscular atrophy (SMA) know all too well, people with disabilities often face a slew of assumptions and misconceptions. To improve awareness and understanding, I want to address…
How my technology use has shifted over the years
The digital age has transformed how we connect, empowering people like me to engage with the world from anywhere. My tech obsession ignited around age 14 with the thrill of my first…
Summer memories remind me of the power of community
As another hot summer gets underway, I’ve been reflecting on two pivotal events that took place a year ago this month. These memories elicit feelings of joy whenever I’m feeling down in life…
Celebrating an unbreakable bond between sisters
“Having a sister is like having a best friend you can’t get rid of. You know whatever you do, they’ll still be there.” — Amy Li My sister, Jessie, and I have always shared…
Why I decided to adapt to life with scoliosis instead of having surgery
Being diagnosed with a progressive neuromuscular condition like spinal muscular atrophy (SMA) often brings a range of physical challenges that significantly impact both the people with the disease and their loved ones.
The importance of seeking help for mental health challenges
Those of us who live with a disability that severely limits our motor skills find ourselves continually depending on others for assistance. In addition to essential daily tasks, we need assistance with seemingly mundane…
Among my most cherished college memories is the day I graduated
Memories wield immense power in the recesses of the mind. They can evoke varying emotions, from exhilaration and delight to sorrow and profound grief. Countless memories regularly swirl through my consciousness. Yet, as I…
Being resilient: My journey of hope and triumph
My medical journey began with challenges but has evolved into a story of resilience and hope. Born on a sweltering August day in New York, I arrived as a gift to my mother, resembling…
