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Blog Post | Advocacy, Inclusion, Independence, Personal Stories

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: Accessible Air Travel, In Case You Missed It, Parenting, Quest Podcast, Transitions


Blog Post | Health, Lifestyle, Personal Stories

MDA Ambassador Guest Blog: The Joy of Motherhood

Cassidy Nilles is 34 years old and lives in Illinois. Cassidy lives with Limb Girdle muscular dystrophy (LGMD) type 2J. She lives with her daughter, Capri, and their 9-year-old maltipoo,…

Tags: Ambassador Guest Blog, Ambassadors, Caregiving, Parenting, Relationships


Blog Post | Health, Science + Research

Simply Stated: Updates in SELENON-Related Myopathy

SELENON (SEPN1)-related myopathy (SELENON-RM) is a rare congenital neuromuscular condition characterized by slowly progressive axial (trunk and head) muscle weakness, early-onset rigidity of the spine, scoliosis (sideways curve of the spine),…

Tags: Clinical Trials, Community, Drug Development, Healthcare, Innovation, MDA Care Centers, MDA Resource Center, Research, Research Advances, Resources, Simply Stated


Blog Post | Get Involved, Health, Lifestyle, Personal Stories

MDA Guest Ambassador Blog: Focusing on Mental Health

Branden Leimbach is 26 years old. He is a born and raised Nebraskan. Branden was diagnosed with Mitochondrial Myopathy at the young age of 6. He has a degree in…

Tags: Ambassador Guest Blog, Ambassadors, COVID-19, Community, Healthcare, Mental Health, Young Adults


Blog Post | Advocacy, Get Involved, News

Help! Solutions Needed for Finding In-home Caregivers

A national caregiver shortage makes finding in-home caregivers a challenge for people with disabilities. Advocacy can help lead to solutions.

Tags: Caregiving, Featured Content, Personal Care Attendants


Blog Post | Finding a Diagnosis, Science + Research

Nongenetic Factors May Increase Odds of Developing ALS

Genes play a role in ALS (Lou Gehrig’s disease), but so do nongenetic risk factors. Here’s what scientists know about what causes ALS.

Tags: Featured Content, Research


Blog Post | Advocacy, Finding a Diagnosis, Get Involved, Health, Inclusion, Independence, Lifestyle, Personal Stories

Episode 41- Courage Kindled: A Hero’s Unbreakable Spirit

In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but…

Tags: Caregiving, Community, Healthcare, Mental Health, Relationships, Resources


Blog Post | Lifestyle

Get Outside: Tips for Accessible Outdoor Activities

As the weather warms and the days lengthen, there are many different ways to get outside and enjoy the great outdoors. It’s the season of picnics, concerts, park days, and…

Tags: Community, Resources, Staying Active


Blog Post | Advocacy, Get Involved, Inclusion, Independence, Lifestyle, Personal Stories

Episode 40- Unlocking Access and Inspiring Action with Sophie Morgan

In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, TV personality and producer, Sophie Morgan. She devotes her time and expertise to create inclusive spaces for those with…

Tags: Accessible Air Travel, Community, Relationships, Staying Active, Travel


Blog Post | Finding a Diagnosis, Health

How to Cope When Your Child Is Diagnosed

Tips to cope and live with hope when your child is diagnosed with muscular dystrophy or any neuromuscular disease.

Tags: Community, Community Education, Featured Content, MDA Care Centers, MDA Resource Center, Mental Health, Parenting, Resources