Double Take, SMA Runway Show, Features Styles With Accessibility
New York Fashion Week is known for its statement dresses and elegant models. But this year, one runway show will…
Articles by Hawken Miller
Determined Life of Service Keeps Man With SMA Type 2 Going at 66
Doctors expected Stephen Mikita to live for six months after his diagnosis, in the late 1950s, with spinal muscular…
Advocates Step Up to Mark SMA Awareness Month in US
For most of his life, Jose Flores avoided interacting with the spinal muscular atrophy (SMA) community because he felt…
List of Rare Diseases Tops 10,000 – and Is Growing – New Analysis Finds
Note: This story was updated July 13, 2022, to correct the name of Rare-X’s CEO Charlene Son Rigby.
Brothers With Matching Mullets Embrace a Lighter Side of SMA
The video opens with Blake Shofner driving and saying to his younger brother, Nolan, “Dang Nolan, these roads are…
From Actor to Attorney, Woman’s ‘Work Ethic Outshines My Disability’
From being a child actor to a lawyer in the entertainment industry, Alexa Dectis, who has relied on a power…
Organizations Rally to Help Ukrainian Rare Disease Patients
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for…
Telehealth Added to Latest Digital-friendly NORD State Report Card
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally…
‘Painted Waters’ Brings Gaming to Children With Disabilities Like SMA
Playing video games can be a challenge for people with spinal muscular atrophy (SMA). Multiplayer games may pit them against…
RaDaR Serves as Starting Point for Creating Rare Disease Registry
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by…