Research: Finding a Cure for Congenital Myopathies

Boston, MA

Dear Friend,

Thank you for considering participation in our research on myotubular/centronuclear myopathy (MTM and CNM) and related congenital myopathies. Through the generous support of many friends of Joshua Frase and the Frase Foundation, we have developed a comprehensive MTM/CNM-research program at Children’s Hospital and Harvard Medical School. With your help, we hope to improve the lives of children and their families by developing effective diagnostic tests and treatments.

My laboratory hopes to understand and find a cure for MTM and CNM by studying the changes that cause muscle weakness in children with these diseases. We are looking for patients and families to help by enrolling in our research studies. More details on participation can be found on the accompanying “fact sheet.”

Anyone interested in participating should contact Elizabeth Taylor DeChene by phone at (617) 919-2169; by mail at Children's Hospital Boston, Genetics Division, 300 Longwood Ave, Enders 5, Boston, MA 02115; or by email at edechene@enders.tch.harvard.edu. At that time, we’ll be happy to answer all your questions and arrange for your informed consent and participation if you so desire.

Thank you again for your help! The assistance of patients and families such as yours is critical to our success in finding a cure.

With all best wishes and thanks,

Alan H. Beggs, Ph.D
Associate Professor of Pediatrics
http://www.childrenshospital.org/research/beggs/

The Congenital Myopathies: Information for Patients and Families
Download the factsheet here. (PDF file)

Myotubular/Centronuclear Myopathy: Information for Patients and Families
Download the factsheet here. (PDF file)