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 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.

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

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

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...

Two recent sporting events supporting CMD awareness and community.

Check out Community Member Kierra Sunris in her nightly Twitch livestream throughout July!

Cure CMD's film, The Tenacity of Hope, features the raw and real experiences of those living with congenital muscular dystrophy.

My name is Stephanie Chicas. I am 29 years old. This is the story of how recurrent lung infections and one traumatic day prompted me to...

Progress toward treatments for CMD is a battle fought on several fronts. Clinicians work to improve diagnostics, care, and understand the...

Happy Rare Disease Day! Started in 2008, Rare Disease Day is an international event focused on bringing awareness to the more than 7,000...

Executive Director Rachel Alvarez shares a deep dive into her history as a rare disease patient, and what it means to lead Cure CMD.

When Michael woke up with a fever and sore throat last Monday, I assumed it was strep throat. This kid can get strep just by thinking...

Each fall, I email my sons’ teachers to give an overview of their Congenital Muscular Dystrophy (CMD). I explain the differences they can...

Open to all individuals affected by a neuromuscular condition age 6 and older, the Creative Contest seeks to celebrate all the painty,...

We are thrilled to announce that the 2019 Cure CMD-produced documentary, Liam: A Rare College Experience, is now streaming on The...

Living with Congenital Muscular Dystrophy (CMD) can sometimes feel like a battle with an invincible enemy that's inside of me all the...

Everyone has a defining moment in their lives that shapes their entire future. For me, that moment came when I was about 6 years old. I...