Archives
Life with Lily: My Favorite Accessible Fashion & Beauty Tips
Hello! In this blog, I’m sharing accessible beauty and fashion tips I’ve collected through plenty of trial and error. Beauty and fashion are major forms of self-expression for me, and…
Five Things You’ll Find at MDA Engage
Some events are hard to picture before you attend. You may wonder who will be there, whether the topics will apply to you, or if it is worth carving out…
Tags: Community, MDA Engage, Relationships, Resources
Clinical Research Alert: Clinical Study for Adults with Generalized Myasthenia Gravis (gMG)
Researchers at Alexion, AstraZeneca Rare Disease are conducting a clinical study for adults with generalized myasthenia gravis (gMG) who are currently receiving ravulizumab treatment. The study will evaluate whether a…
MDA Ambassador Guest Blog: Lessons in Life and Fatherhood
Rob Roozeboom is the founder of RISE Ministries and the creator of RiseFest, one of the largest Christian music festivals in the Midwest. Living in Iowa with muscular dystrophy, Rob…
MDA Ambassador Guest Blog: Strong Enough to Carry Grief AND Gratitude with FSHD
Skye Anderson lives in North Carolina, and is an advocate living with facioscapulohumeral muscular dystrophy (FSHD). She is passionate about accessibility, spreading awareness, and empowering others with disabilities to use…
MDA’s Guide to the Americans with Disabilities Act (ADA)
For the neuromuscular disease community, the ADA provides protections for people with disabilities to work and participate fully in their communities.
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: Caregiving, Community, Parenting, Research, Resources
MDA Ambassador Guest Blog: A Myasthenia Gravis Voyage of Twists, Turns, and Discoveries
Tina Vassar lives in Durham, North Carolina with her dog Milo. She is 69 years young and has lived with myasthenia gravis for over 30 years. Like many people living…
MDA Joins Forces to Protect NIH Funding
It’s no secret that MDA advocates are a force on Capitol Hill and have routinely commanded the hall of Congress during MDA on the Hill over the years. Jennifer Lane…
Tags: Advocacy Updates, Community, Resources
Clinical Research Alert: Clinical Study for Adults with Generalized Myasthenia Gravis (gMG)
Researchers at Vor Bio are conducting a global phase 3 clinical study (UPSTREAM MG) for adults with generalized myasthenia gravis (gMG) who are AChR or MuSK+. The study will evaluate…