Uplifting Athletes Tackles Funding for Rare Disease Research, Awareness
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is…
Articles by Hawken Miller
SMA UK Network Helps Patients Navigate Adulthood
People with spinal muscular atrophy (SMA) are living longer, attending college, pursuing a variety of careers, and traveling more,…
Two Brothers Making the Most Out of Life With SMA
Participate in a paintball war. Meet Snoop Dogg. Be the first disabled person to go to space. These are just…
Muscular Dystrophy Association Launches Podcast Hosted by SMA Advocate
Today, the Muscular Dystrophy Association (MDA) is officially launching its MDA Quest Podcast, which will feature conversations with neuromuscular…
Danish Family Races to Raise $2.4M for Daughter’s Zolgensma Therapy
Ayah Lundt, a 15-month-old Danish girl with spinal muscular atrophy (SMA)…
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life…
Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is…
Mother Raises 4 Adopted Girls From China With SMA, Chronic Illnesses
When Josylnn Jones McLaughlin moved to Guangzhou, China, to teach conversational English in 2012, she didn’t expect to bring home…
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37…
A ‘Miracle’: Spinraza Gives Boy, Now 5, a Chance to Grow Up
It’s now been more than four years since Spinraza (nusinersen) was first approved by the U.S. Food and Drug Administration,…