We're thrilled to share that after several years following Cure CMD's submission to the Social Security Administration requesting the addition of LMNA-CMD to the Compassionate Allowance List, this CMD subtype is now included. The CAL list is SSA's way of fast-tracking help for people with the most severe medical diagnoses. Conditions on this list are considered serious enough to qualify for disability benefits and your application will be moved to the front of the line. Speci

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...

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.

Advocacy Advisory Council defines legislative priorities based on CMD Community survey results.

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.

One of the most important ways you can advocate is to vote.

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...

Like most families with a high school junior, we have begun the college discussion at our house. Higher ed is not uncharted territory for...

I am 30 and I have been living with SELENON-Related Myopathy my whole life. This rare form of muscular dystrophy has affected me in many...

On September 29, I woke up eagerly because I was going sailing with my family, and not just any kind of sailing, adaptive sailing. The...

For all the unintentionally insensitive and thoughtless things people have said to me over the years, no one has ever asked me the...