This resource group and this website are made possible through the support of interested individuals and other groups. We have been approved by the Internal Revenue Service as a section 501(c)(3) tax exempt organization, so contributions to our group are fully deductable for Federal Income Tax purposes. If you are interested in supporting us in our efforts to learn more about myotubular myopathy and transmit these learnings to others, we would appreciate your help.  Our mailing address is:

Myotubular Myopathy Resource Group
2602 Quaker Drive
Texas City, TX 77590

Our phone number is 409/945-8569.    Our fax number is 409/945-2162.

Additional contact:

Sarah, mother of a child with Titin-related CNM: or home: 973-882-1996

Alison Frase, mother of a child with XLMTM: or mobile: 904-607-1358