Photo courtesy of Samantha Przybylski Day 7 of 31 This is Scarlett Przybylski’s story: Hi, my name is Scarlett! I just turned 4. Next year I will turn 5! I had a Pokémon birthday, and Pikachu is my favorite! I have a mama and a papa. My papa’s name…
Photo courtesy of John Jones II Day 6 of 31 This is John Jones II’s story: I was diagnosed with SMA at a very young age, making it a part of my life since before my recollection. That is a blessing really, to not have to navigate life that…
Photo courtesy of Sarah Cheung Day 5 of 31 This is Sarah Cheung’s (@sarahpcheung) story: From a young age, I wanted to help others. I was crushed when I realized I could not become a nurse due to my physical limitations (I have SMA type 1). Given my…
Photo courtesy of Chaz Hayden Day 4 of 31 This is Chaz Hayden’s (@thechazhayden) story: Hey, friends! My name is Chaz, I’m 25 years old, and I have SMA type 1. I’m a soon-to-be-published author with my debut novel, The First Thing About You, releasing in fall…
Photo courtesy of Ainaa Farhanah Amali Day 3 of 31 This is Ainaa Farhanah Amali’s (@ainaafrhanah) story: “Sweet, sour, salty, mixed” — that’s how I describe Year 2 of the COVID-19 pandemic, which of course has not ended yet. Last year, when the first cases were announced, many…
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…
Photo courtesy of Rachel Stewart Day 2 of 31 This is Rachel Stewart’s story: Growing up, I didn’t have any role models with my disability, let alone know someone with SMA who was married, or in a queer relationship. And I certainly didn’t see any representation on TV or…
Photo courtesy of Alvaro Cheherlian Day 1 of 31 This is Alvaro Cheherlian’s (@_hotwheelz) story: Being an entrepreneur is hard. Being an entrepreneur with SMA adds challenges that make it even harder, but I didn’t let that stop me. My name is Alvaro Cheherlian, I have type…
SMA News Today’s 31 Days of SMA campaign will publish one story per day from someone who has been affected by the disease for SMA Awareness Month in August. Stay tuned for the first story in the series starting on Aug. 1, and follow us on Facebook and Instagram for…
The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…
