Archives

Nusinersen (Spinraza) changed the game for people with SMA. Learn how it became the first FDA-approved therapy and what it means for families.

Darlene, who was diagnosed with spinal muscular atrophy (SMA) type 3 at age 19, just turned 55 years old. She has spent her life proving that challenges do not define…

Sanguine Biosciences, a provider of at-home clinical research services, is seeking people living with myotonic dystrophy type 1 (DM1) to participate in a natural history. The goal of this research is…

Probably like you, recent years have altered our lives in ways both expected and completely unforeseen. Some of these changes have led us to review certain areas of our lives,…

Just a decade ago, there were no SMA treatments. Now risdiplam (Evrysdi) is changing lives. Learn how it went from a lab to an FDA-approved drug.

Friedreich’s ataxia (FRDA) is an inherited neuromuscular disease that primarily impacts the nervous system and heart and affects about one in 50,000 people worldwide. FRDA is characterized by a slow,…

Chris Carroll is 41 years old and lives with his wife Joy and two children Jordyn (4) and Brogan (who will be 3 soon). Chris works for Mullen Coughlin LLC.…

Mike Huddleston is 62 years old. He is originally from California and now lives in Maryland.  Mike was diagnosed with spinal muscular atrophy (SMA) Type 3 at the age of 16.…

Lorraine Woodward, founder and CEO of Becoming rentABLE. Expedia Group is not only opening the door, but widening the doorway, when it comes to accessible short-term rentals (STR) and vacation…

In this Quest Podcast episode, we chat with MDA Ambassadors, Payton Rule, Fred Graves and former MDA National Ambassador Amy Shinneman. Payton shares a journey of transformation from self-doubt to…