About Cure CMD and mission statement

Cure CMD was established in 2008 by three parents whose children have congenital muscular dystrophy (CMD). CMD represents a group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow.

Cure CMD’s mission is to advance research toward treatments and a cure for congenital muscular dystrophies and improve the lives of those living with CMD through the engagement and support of their community. The organization collaborates with an ever-growing network of dedicated affected individuals, parents, researchers, clinicians, and government advocates worldwide to achieve this mission and continue to center the experiences and voices of CMD affected individuals and families.

Cure CMD works to empower the community, provide reliable and up-to-date information targeted toward their CMD community, and offer steadfast hope and commitment to their mission.

Impact

Through close collaboration with researchers, industry advocates, families, and generous supporters, Cure CMD has made an incredible impact in the lives of those living with CMD:

• Provided funding for $4 million in research grants;

• Launched two clinical trials and supports natural history studies in all five subtypes;

• Grew the Congenital Muscle Disease International Registry (CMDIR) to more than 3,500 affected participants worldwide. If you would like to join or learn about this registry, click here;

• Hosts biennial scientific and family conferences attended by more than 500 stakeholders;

• Created more than 300 hours of video content through live and pre-recorded webinars and in-person events to educate and support the affected community.

• Expanded community reach and engagement by 400% over the last five years.

resources

Cure CMD provides the CMD Community with access to a variety of resources — including resource pages, webinars, blog posts, a peer-to-peer match program, and more to help guide them on their rare disease journey.

Here’s a list of some of the resources that Cure CMD offers:

• Community Resources (employment, education, transitions, healthcare, driving, mental health, etc.);

• Cure CMD Blog;

• P2P Match Program;

• Webinar Series On-Demand Playlist, where you can view all of our previous events, all on various topics surrounding the disability community;

• An upcoming webinar registration for Adaptive Self-Care: https://bit.ly/CMDSelfCare. Learn about adaptive daily products & wellness tools that work for all abilities to help you feel & look your best;

• The Tenacity of Hope is a documentary film by Cure CMD, in partnership with Living in the Light, to showcase members of the congenital muscular dystrophy community and their diverse journeys and perspectives. Originally created for their 2022 Patient-Focused Drug Development meeting with the FDA, we encourage sharing this film with family, friends, and colleagues, so that they may gain a better understanding of what it means to live with congenital muscular dystrophy. The full film is available now for on-demand viewing: https://youtu.be/Iliwi8JVaYo?si=BURJGXgnbBN3M-RC.

Connect with Cure CMD on social media!

You can find Cure CMD on Facebook, Twitter, Instagram, LinkedIn, and YouTube.

To visit Cure CMD’s homepage, click here.