Learn how the new Medicaid work requirement rule could impact individuals living with congenital muscular dystrophy (CMD), what exemptions may apply, and how your voice can protect access to essential services.

Beginning a PhD is rarely straightforward. Beginning one just as the world shuts down adds an entirely new dimension to adaptability. For George Mason University biosciences PhD student Matthew Lefkowitz, that quality would come to define his doctoral journey.

Cure CMD announces its selection as an Official Charity Partner of the 2026 TCS New York City Marathon and introduces Team Cure CMD.

Ashley Burkman shares how testifying for Medicaid highlighted the daily reality of CMD caregiving and how honest storytelling can drive advocacy and change.

Cure CMD joined rare disease advocates in Washington, DC for Rare Disease Week 2026, meeting with lawmakers to raise awareness of congenital muscular dystrophy and the urgent need for research support.

It Started With an Idea I’m Angela, and I live with SELENON-Related Myopathy. As a member of the CMD community, I have had the privilege of being connected to others living with similar neuromuscular diseases. Being part of this community has continually reminded me that while CMD can feel isolating at times, we are never truly alone. In 2017, I attended an MDA-sponsored premiere of I’ll Push You , a documentary that follows two best friends, Justin and Patrick. Justin has a

In August, seven CMD advocates from Wisconsin, Ohio, and New York joined Rare Across America, connecting with Members of Congress to spotlight critical issues affecting the rare disease community. Discussions focused on restoring the Rare Pediatric Disease PRV Program, improving Medicaid access for kids needing out-of-state care, and protecting NIH and FDA research funding. Advocates shared personal stories and called for bipartisan support to ensure progress in treatment dev

Over 340 attendees gathered in Philadelphia for the 2025 Scientific & Family Conference, uniting families, clinicians, and researchers to share stories, advance care, and spark new collaborations. Highlights included 60 sessions, Kids Camp, young adult meetups, and the Scientific Symposium.

Cure CMD’s Creative Contest celebrates its 5th year of providing an outlet for people living with CMD and other neuromuscular conditions to promote the creative expressions of their stories through visual, physical, or performance art.

Learn how Cure CMD is fighting harmful legislation like the OBBBA, NIH funding cuts, and threats to Medicaid through strategic advocacy and rare disease policy action. Discover how you can help protect access to care, advance research, and make your voice heard.

This Father’s Day, Cure CMD celebrates the strength, insight, and quiet resilience of dads raising children with congenital muscular dystrophy. In this special blog a group of CMD dads reflect on what they’ve learned, how they stay grounded, and the unique connections they share with their children.

In honor of Mother’s Day 2025, Cure CMD asked five incredible mothers to reflect on caregiving, resilience, and the unexpected joys of...

CMD Community Member, Ashley Burkman, has written a new book, “Move,” featuring characters living with congenital muscular dystrophy.

Cure CMD’s Community Engagement Manager and tireless advocate for the rare disease and disability communities, was recently featured by her Alma mater's campus magazine, the University of Kentucky’s UKNow.

CMD affected individuals are given the opportunity to visit overseas through a foreign exchange arranged by community members.

CMD Community Member & Executive Producer, Steve Way, releases groundbreaking film, Good Bad Things, in 50 AMC Theatres across the U.S.

Join a newly forming council to help direct legislative priorities for the CMD community.

I had the opportunity to kick off my rare advocacy journey and experience my first Capitol Hill Day.

Honoring community member Simon Cantos and his legacy in the congenital muscular dystrophy community.

My rare disease advocacy journey started later in life. Like many, I had always felt too overwhelmed and unsure of how to start and was...