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February 2023 Newsletter
Thank you to everyone who participated in our 2022 Scientific & Family Conference! If you did not get a chance to attend or would like to refer back to the information, much of the content is now available on Cure CMD's YouTube Channel.
There's still time to register for this 10-month program for stakeholder community members to share and learn about science, current and potential future research, and become an active voice in directing the CMD research roadmap.

Cure CMD is the fortunate recipient of a grant from Sarepta Therapeutics to promote genetic testing in the LGMDs.
Many people with LGMD were diagnosed based solely on symptoms without genetic testing, and so they do not know their specific subtype. Genetic confirmation is important because it can facilitate earlier access to specialized care, potential clinical trial and natural history study participation and improved access to potential future treatments. Read More
Our goal at Cure CMD is to bring you educational content relatable to your CMD journey to support our community and help improve the lives of those living with CMD. We invite you to explore our library of recordings on various CMD topics of interest. Watch at your leisure on subjects that include employment, educational transitions, mental health & more.
For the first time since 2020, 2023 Rare Disease Week on Capitol Hill, hosted by Rare Disease Legislative Advocates (RDLA)will be in-person from Feb 28 to Mar 02. Represent the CMD community at 2023 RDW and apply for a travel stipend from Cure CMD... Read More
In 2022, Cure CMD's Legislative Advocacy Team continues to support legislation providing access to healthcare, education, employment, travel and funding for research. Join us in 2023 by reaching out to your lawmakers: Your CMD story matters ... Read More
"Anyone can become a Rare Disease Legislative Advocate — sharing your or your child's story and a desire to drive policies that positively impact congenital muscular dystrophy are the only qualifications needed to be an instrument to change." — Rachel Alvarez, Executive Director
My name is Stephanie Chicas. I am 29 years old. This is the story of how recurrent lung infections one traumatic day prompted me to start taking life one breath at a time.

I was born full-term and showed no signs of distress or abnormalities, yet as I grew... Read More
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