Archives
Your Guide to Genetic Testing for Neuromuscular Diseases
Genetic counselors answer frequent questions about genetic testing: How much does genetic testing cost? Should you be tested?
Insights by Ira: Let’s Get Active This Summer!
It’s the most wonderful time of the year! The holiday’s season already? No! Summertime! That’s right! The time of year when the days are long and hot, the nights are…
Tags: Ambassadors, Community, Insights by Ira, Ira, MDA Ambassadors, MDA National Ambassador Blog, Relationships
MDA Ambassador Guest Blog: How Making an Impact Renewed My Purpose After FSHD Diagnosis
Ranae Beeker, who is in her late 60s, has found her greatest joy in her roles as a mother to Alethea and Gavin, and as a Gramma to Eilif and…
The Joys (and Lessons) of Fatherhood from MDA Ambassadors
As every father knows, parenthood is an incredible journey filled with joy, challenges, victories, growth, and love. For dads living with a disability, raising children sometimes requires extra patience, resilience,…
Tags: Ambassadors, Community, Parenting, Relationships
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: Ambassadors, Community, Healthcare, In Case You Missed It, Mental Health, Staying Active, Travel
Quest Podcast: Invisible People: Making the Rare Seen
In this Quest Podcast episode, we chat with a former pharmacist turned singer/songwriter who lives with Generalized Myasthenia Gravis. Dania Quill has devoted her time and expertise to create inclusive…
MDA Ambassador Guest Blog: How My MG Journey Has Shaped Who I Am Today
Courtney B. is a passionate advocate for living life to the fullest despite the challenges that come with chronic illness. A high school senior from Indiana, she is an early…
Tags: Ambassador Guest Blog, Ambassadors, College, Community, Mental Health, Relationships, Staying Active, Summer Camp, Year of Independence, Young Adults
Accessible Air Travel Is Ready for Takeoff. Can It Avoid Turbulence?
Updates on recent policy and rule changes to make air travel safer and more accessible for people with disabilities.
My Father’s Journey with ALS
Father’s Day can be a beautiful celebration — but also a tender time for many. For those whose fathers are no longer with us, this day may carry sorrow along…
Simply Stated: Updates in Ryanodine Receptor 1-Related Disorders (RYR-1-RD)
RYR-1-Related Disorders (RYR-1-RD) are a group of rare, inherited muscle disorders caused by variants in the RYR1 gene. This gene encodes the ryanodine receptor type-1 (RyR1) protein, which is important for…