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Congenital Muscle Disease CMD Tissue Repository

Congenital Muscle Disease (CMD) Tissue Repository

The Congenital Muscle Disease Tissue Repository Has Moved

The Congenital Muscle Disease Tissue Repository has moved to the Beggs Laboratory at Boston Children's Hospital. To inquire about making a tissue donation as a patient living with congenital myopathy, or obtaining samples from affected patients as a qualified researcher, please send an email to stacy.cossette@childrens.harvard.edu.

Why Donate Tissue?

  • Accelerating Discovery: Human tissue is essential for increasing our understanding of these rare diseases, testing scientific theories, and screening novel treatment strategies.
  • Guiding Future Therapies: Insights gained from human tissue studies can help guide next steps toward future treatment options.
  • Streamlining Global Research: Centralized collection, expert storage, and efficient delivery of samples to qualified scientists worldwide allows research to advance at a much faster pace.
  • The Power of Diverse Samples: To achieve accurate and robust results, scientists require tissue samples from a wide and diverse group of individuals.

How to Support: If you have an upcoming surgery, past muscle biopsy stored in a hospital, or want to discuss end-of-life donations, simply contact Stacy Cossette at stacy.cossette@childrens.harvard.edu to learn how your samples can be preserved for vital medical research rather than discarded.

Care of Congenital Myopathy: A Guide for Families

The Care of Congenital Myopathy: A Guide for Families is a comprehensive care guide developed for families and people with congenital myopathy (CM) in response to community requests for useful information. This work began as a translation into more easily understood language from the Consensus Statement on Standard of Care for Congenital Myopathies medical document that was published in 2012 by Wang and colleagues in the Journal of Child Neurology. As the guide for families took shape, it was apparent that the guidebook would include much more than basic medical information, since the writing team had terrific input from the very people living with and caring for someone with CM. The family guide became testimony to many of the challenges, joys, concerns, and triumphs that are typical for those living a not-so-typical life.

Our sincere appreciation goes out to everyone that contributed to what we hope will be an engaging, informative manual for families and individuals with CM.

English Version (PDF)

Russian Version (PDF)

Spanish Version (PDF)

Polskie Version (PDF)

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