Archives
Simply Stated: Updates on Friedreich’s Ataxia (FRDA)
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,…
Tags: Simply Stated
MDA Ambassador Guest Blog: Parenting, LGMD, and Choosing Joy
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.…
Tags: Ambassador Guest Blog, Ambassadors, Mental Health, Parenting, Relationships, Staying Active, Young Adults
MDA Ambassador Guest Blog: The Joy of Accessible Sailing
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.…
Expedia’s New Initiative is Transforming Accessibility for Short-Term Rentals
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…
Tags: Community, Innovation, Resources, Travel
Quest Podcast: Unpacking Disability Pride- Voices from the MDA Community
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…
In Case You Missed It…
Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and…
Understanding MDA Advocacy’s Education Policy Efforts
At MDA, we believe that students in the neuromuscular community deserve to pursue their own education, career goals, and dreams just like their peers do. To do this, we know…
Tags: Advocacy Updates, College, Education, Young Adults
Simpler, Safer Transfers: Helpful Tips and Useful Equipment
With limited mobility, transferring from one spot to another is a daily challenge. Find tips and equipment for easy, safe transfers.
Tags: Caregiving, Equipment and Assistive Devices, Featured Content, Personal Care Attendants, Travel
Quest Podcast: Service Dogs, Inc. – Paws with a Purpose
In this Quest Podcast episode, we chat with a former attorney who left her law practice to devote her time to building Service Dogs, Inc. Sheri Soltes founded Service Dogs,…
Tags: Community
Clinical Research Alert: Phase 3 Study of RGX-202 in Boys with DMD
REGENXBIO Inc. is enrolling boys living with Duchenne muscular dystrophy (DMD) to participate in a phase 3 clinical trial to evaluate the safety, tolerability and efficacy of the investigational gene…