International network. Founded 1993. Information for patients, parents and doctors regarding myotubular myopathy, a family of three rare muscle disorders usually causing low muscle tone and diminished respiratory capacity. Exchanging of successes with other affected families. Phone support, literature, information and referrals.
Write:
Myotubular Myopathy Resource Group
c/o Pam Scoggin
2602 Quaker Dr.
Texas City, TX 77590
Voice: 409-945-8569
Fax: 409-452-2162
Website: http://www.mtmrg.org
E-mail: myopaty@optonline.net
Verified: 4/5/2012