Cure CMD

Cure CMD’s mission is to advance research for treatments and a cure for Congenital Muscular Dystrophies. We will improve the lives of those living with CMD through engagement and support of our community.

Cure CMD was founded in 2008 by three parents whose children were affected by Congenital Muscular Dystrophy. Through close collaboration with scientists, doctors, dedicated volunteers, involved families, and generous donors, Cure CMD has achieved significant impact in its first decade as a nonprofit organization:

  • Launched two clinical trials
  • Completed a five year natural history study
  • Grew the Congenital Muscle Disease International Registry (CMDIR) to 2,600 registrants worldwide
  • Co-Funded over $2 million in research grants

19401 S. Vermont Avenue Suite J100
Torrance, CA 90502

United States of America



Call +13232502399
Fax +13106842023


Rachel Alvarez Rachel Alvarez

Rachel Alvarez is the Director of Operations for Cure CMD and the Congenital Muscle Disease International Registry, and serves as Secretary for Cure CMD's Board of Directors. She has a background in healthcare finance, operations and non-profit management, and lives with congenital muscular dystrophy.

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Anne Rutkowski Anne Rutkowski

Dr Anne Rutkowski is a practising board-certified emergency medicine physician in Los Angeles. Anne's daughter has congenital muscular dystrophy, subtype dystroglycanopathy.

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Susan Sklaroff Van Hook Susan Sklaroff Van Hook

Susan Sklaroff-Van Hook is a project support volunteer for the advocacy organization Cure CMD and is currently leading the initiative to develop lay guidelines to best practice care of CMD on behalf of Cure CMD.

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Diane Smith-Hoban Diane Smith-Hoban

Diane Smith-Hoban is the mom to two great boys – Luke is 14 and has UCMD and his brother Christian is 13.  She is a social worker by training with an MSW degree from Temple University and has worked extensively in the child welfare system in Philadelphia, mostly as a child advocate representing child victims of abuse and neglect.

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