Archives
Understanding Spinal-Bulbar Muscular Atrophy
Q&A with an expert on spinal-bulbar muscular atrophy (SBMA), or Kennedy’s disease
From Classroom to Courtroom: How Eric Arnold Navigated Accessibility in His Education and Career
How Eric Arnold, an attorney living with spinal muscular atrophy (SMA), built an accessible career and lives independently.
Progress Now: Immunotherapy Study Recruiting, Drug Cleared for Expanded Access, and More
Tracking research updates and breakthroughs that help accelerate treatments and cures across MDA diseases
Say Yes to Gene Therapy? Factors to Consider When Gene Therapy Is an Option
When you have access to gene therapy for a neuromuscular disease, weigh the risks and benefits for yourself or your child in your decision-making.
Tags: Clinical Trials, Drug Development, Featured Content, Gene Therapy, Healthcare, My Gene Therapy Journey, Research
Financial Education and Planning Help You Take Charge of Your Financial Future
From strict Medicaid asset limits to frequent medical expenses to underpublicized public programs, families with disabilities can feel like they are walking a financial tightrope trying to balance it all.…
7 Essential Tips for Family Caregivers to Avoid Common Injuries
Learn expert-backed strategies for family caregivers to prevent injuries, protect their well-being, and care for their loved one safely.
MDA’s Umbrella of Care: One Organization Connecting 300+ Neuromuscular Diseases
MDA supports 300+ neuromuscular diseases, uniting rare disease communities and driving research, advocacy, and care under one umbrella.
Clinical Research Opportunity: Phase 3 Study of Cladribine in People with Generalized Myasthenia Gravis (gMG)
Researchers at EMD Serono Research & Development Institute, Inc. are working to better understand generalized myasthenia gravis (gMG) and study effectiveness of a potentially new treatment. The study People who have…
MDA Ambassador Guest Blog: How Finding Community Helped Me Face the Fear of Having My Son Tested for CMT
Kevin Crowley is a 48-year-old father of two, husband to the most beautiful woman in the world, dad of a yellow Labrador Retriever, and a coach of the world’s greatest…
Tags: Ambassador Guest Blog, Ambassadors, Community, Genetic Testing, Mental Health, Parenting, Relationships, Young Adults
MDA Ambassador Guest Blog: My Journey to Gratitude is Paved with Acceptance and Advocacy
I’m John Krepps and I am living with Charcot Marie Tooth disease, also known as CMT. I live in Pittsburgh Pennsylvania. (so yes, I’m a Steelers fan.) I’m married to…