Resources

Here are some helpful links to put you in touch with more information, families with NM and leading researchers.

Nemaline.org
This web site is the official Nemaline Myopathy source for all information. This website was created by David McDougal in 1999. He was diagnosed with NM nearly 40 years ago. He also manages a support group that has hosted 2 world conferences in Canada and Scotland.

Wikipedia — Nemaline Myopathy
Look to Wikipedia for a quick explanation of NM.

GeneTests.org
This is a link to the most extensive scientific research paper written about Nemaline Myopathy.

ChildrensHospital.org
This site visits Dr. Allan Beggs lab at Children’s Hospital Boston. The only lab in the U.S. currently doing research on NM.

Treat-NMD.eu
This is the site for Carina Wallgren-Pettersson MD. She has studied Nemaline Myopathy since 1984 and published original articles, book chapters and recommendations for the care of patients with this disorder. She works in Helsinki, Finland.

Medfac.USYD.au
Dr. Monique Ryan is a paediatric neurologist in Australia that has studied the use of Tyrosine in people with NM.

Waimr.UWA.edu
Professor Laing developed molecular neurogenetic research and molecular neurogenetic diagnostics at The Australian Neuromuscular Research Institute and Royal Perth Hospital. He is currently undergoing research for treatment of some forms of NM.

INMR.com.au
Kathryn North M.D., F.R.A.C.P. is the Deputy Head of Institute for Neuromuscular Research in Australia. This is a link to an article, Dietary L-Tyrosine Supplementation in Nemaline Myopathy published in the Journal of Child Neurology by Monique M. Ryan, M Med

Cure CMD.org
This links to a helpful webinar on Scoliosis Management.

2011 Article in "Brain"
"Hypertrophy and dietary tyrosine ameliorate the phenotypes of a mouse model of several nemaline myopathy", by Kathy North