Archives
Episode 37- How to find Meaning and Fulfillment with Isaac Banks
In this Quest Podcast episode, we chat with one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified…
Tags: Relationships
Raising Rare Disease Awareness by Design
Graphic Designer and MDA Board of Directors member, Matt Plummer Increased awareness, the dedication of advocates, and innovations in research have brought progress to the treatment landscape of rare disease.…
Tags: Community, Fundraising, Shamrocks
MDA Ambassador Guest Blog: Finding Fulfillment in Retirement
MDA Ambassador Mike Huddleston Mike Huddleston is 60 years old. He is originally from California and now lives in Severn, MD. Mike was diagnosed with spinal muscular atrophy (SMA) Type…
Tags: Ambassador Guest Blog, Ambassadors, Community, Relationships, Staying Active, Travel, Year of Independence
5 Reasons to Join Our MDA Advocacy Focus Groups
MDA Advocacy offers many ways to get involved in the advocacy process. Our primary goal is to empower people living with neuromuscular disease to live, work, and play while leading…
Tags: Advocacy Updates, Community
MDA National Ambassador Blog-Letters from Leah: Hello 2024
MDA National Ambassador Leah Z. Hello friends, As we say goodbye to 2023, we welcome a New Year. I am so excited to see what 2024 has in store! I…
Tags: Ambassadors, Leah, Letters From Leah
Announcing the 2024 MDA Clinical & Scientific Conference Agenda
The 2024 MDA Clinical & Scientific Conference is just around the corner. We’re looking forward to you joining us, as we showcase groundbreaking research and clinical accomplishments by dedicated professionals…
9 Questions to Ask Before Joining a Clinical Trial
Experts recommend asking these nine questions before joining a clinical trial so you know what to expect.
Research Study Alert: Noninterventional Study in People with DMD and BMD
Study Coordinators at CureDuchenne Link® are seeking individuals living with Duchenne or Becker muscular dystrophy (DMD or BMD) or carriers to participate in a noninterventional study. The objective of this study is…
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…
Tags: Advocacy Updates, Ambassadors, Amy, Community, Leah
Simply Stated: Updates in Collagen VI-Related Dystrophy
Collagen VI-related dystrophy (COL6-RD) is a rare genetic muscle disease caused by defects in one of three genes that form a triple helix protein (collagen VI) found in the extracellular…
Tags: Clinical Trials, Drug Development, Genetic Testing, Healthcare, Innovation, MDA Care Centers, MDA Resource Center, Research, Research Advances, Simply Stated