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2025 Rare Disease Week Recap
CMD Advocates gathered in Washington, DC to honor, celebrate & champion for those living with rare disease.
Kelly Berger & Avery Roberts
Mar 113 min read


Boston University Spotlights CMD Community Member Justin Moy and His Mission to Advance Research
CMD Community Member, Justin Moy, shares his journey with LAMA2-related muscular dystrophy and his life quest to cure his own condition.
Molly Callahan
Mar 111 min read

A Message from Cure CMD’s Advocacy Team Lead
The Cure CMD Legislative Advocacy team, along with our advocacy partners, continue to actively monitor developments and will provide updates
Lani Knutson
Feb 121 min read


Subtype-Specific Care Guidelines on the Way to Becoming Reality
The meeting to kick off a project to publish CMD subtype-specific care guidelines was a great success.
Rachel Alvarez
Feb 63 min read


Cure CMD Receives 2024 MDA Advocacy Collaboration Grant
Cure CMD Receives 2024 MDA Advocacy Collaboration Grant
Lani Knutson
Feb 51 min read

Community Pulse: Legislative Priorities
Advocacy Advisory Council defines legislative priorities based on CMD Community survey results.
Lani Knutson
Oct 2, 20242 min read


Affected Individuals Flourish with an Overseas Exchange Opportunity
CMD affected individuals are given the opportunity to visit overseas through a foreign exchange arranged by community members.
Kelly Berger & Avery Roberts
Oct 1, 20243 min read

One Step Closer to LAMA2-RD Clinical Trials: Modalis Therapeutics
Modalis Therapeutics program for LAMA2-RD gene therapy granted Rare Pediatric Disease Designation by FDA.
Gustavo Dziewczapolski, Scientific Director
Oct 1, 20242 min read


Research Update: LMNA
We are honored to support groundbreaking discoveries related to LMNA-CMD.
Gustavo Dziewczapolski, Scientific Director
Sep 24, 20245 min read


Workshop to Establish Subtype-Specific Care Recommendations for Congenital Muscular Dystrophy
We are thrilled to announce a new clinical workshop focused on establishing CMD subtype-specific care recommendations.
Cure CMD
Sep 1, 20242 min read

Community Member Produces Groundbreaking Film
CMD Community Member & Executive Producer, Steve Way, releases groundbreaking film, Good Bad Things, in 50 AMC Theatres across the U.S.
Kelly Berger & Avery Roberts
Aug 14, 20242 min read

Make Your Voice Heard - Vote!
One of the most important ways you can advocate is to vote.
Lani Knutson, Advocacy Team Leader
Aug 7, 20242 min read
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