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...

The Tenacity of Hope is a documentary film by Cure CMD, in partnership with Living in the Light, to showcase members of the congenital...

By September 30, 2023, Congress must reauthorize the Federal Aviation Act (FAA). Changes can be made when an act is reauthorized, and advoca

Many steps must be taken to ensure you get the "full college experience" that other kids get while staying on campus. Here, I will share wha

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

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

Telehealth services have been critical to maintaining safe and consistent access to health care for patients with rare diseases such as...

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

I remember the night I was asked to be a part of the production, I was so thrilled, I almost cried! I’ll never forget what one of my...

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...

Ohioans have been focused on protecting their family from the COVID crisis. But that is not the only public health crisis facing...

My first Cure CMD conference memories actually pre-date Cure CMD and the conferences themselves. In the early 2000s, when I was around...

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...

An all-virtual conference will cover care and research, and events for kiddos! It’s been way too long since July 2019, when many of us...