Article
Storytelling, Awareness, and the Race Against Time in Duchenne Muscular Dystrophy
A conversation with advocate Thomas Bartlett on why storytelling and public awareness, as much as science, drive funding, policy, and access in Duchenne.
Tag
#advocacy
All articles and blog posts tagged #advocacy.
Articles
Article
The Same Disease, Different Countries: What Duchenne Parents in America and Georgia Reveal About Access, Hope, and Time
A reported comparison of how Duchenne families in the United States and Georgia experience access, advocacy, and the urgency of time.
Article
When Time Is Stealing Your Child: A Journalist's First Encounter With Duchenne
A journalist's first-person account of interviewing parents of children with Duchenne muscular dystrophy in Georgia, and what the conversation revealed.
Article
Children Waiting While Time Runs Out: The Human Cost of Duchenne in Georgia
Inside the Duchenne movement in Georgia: families, children, daily life, and what it costs to wait.
Blog
Blog
Connecting With Other Families: Peer Support in Duchenne
No family should face Duchenne alone. How connecting with other families helps, where to find peer support, and how to use online communities wisely.
Blog
Working With DMD Patient Organizations
Patient organizations in DMD: PPMD, MDA, CureDuchenne, Jett Foundation, Duchenne UK. What they do, how families use them, and how to get involved.
Blog
DMD Patient Advocacy History and Impact
Dmd patient advocacy history shows how families shaped research priorities, drug review, care standards, and access debates.
Blog
From Parent to Advocate: A Practical Guide
Many DMD parents become advocates. This guide describes what that work involves, how to start, and how to do it sustainably.