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...

Use the template here to urge your Congressperson to support it! In 1983, the U.S. Congress passed The Orphan Drug Act, a law that...

Six Things I Have Learned While Raising Two Boys with SEPN1 Related Myopathy The questions “Why?” and “Why me?” cannot be answered. Some...