Nemaline Myopathy Support Group


Fundraising Poster

NM Forum 2013


Nemaline Myopathy Forum

Holiday Inn
St. Catharines
Ontario, Canada
26-28th July, 2013

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Please help our funds towards our 5th international convention where families have the rare opportunity of meeting others dealing with the difficulties of living with a disability that very few doctors have knowledge of. Some leading scientists are invited to talk about their research findings. Medical support professionals will also explain why and how to deal with various symptoms.

Nemaline myopathy is a rare neuromuscular disorder which affects the voluntary muscles and is usually non-progressive. The severest form appears at birth, and death can occur in the first few days, weeks or months of life due to respiratory failure. The most common form of the disease is not fatal. Nemaline means thread-like, and researchers chose this name because of the presence in affected muscle cells of threadlike or rod-shaped material. The significance of these thread / rod-like bodies is still not clear. Symptoms are weakness in the skeletal muscles (leg, arm, face and trunk). Most people with NM have long, narrow faces with high-arched palates, slender bodies and curvature of the spine are common. The jaw, tongue and throat muscles may also be affected, leading to speech and swallowing difficulties. A study in Finland estimated that only 1 in 50,000 live births have nemaline myopathy, making it one of the rarer muscle disorders. The main research labs are in Finland, Australia, USA, with smaller teams in Europe.

Convention delegates from around the world will socialize in a relaxing hotel, listen to scientists and support staff, learn from each other and swap life stories and useful anecdotes.

Our first convention in Toronto, 2004 was a great success. 25 people with NM became the biggest gathering ever! NMC09 in New York increased the record to 36!

Please contact David McDougall( if you would like to donate or sponsor our meeting.

Main sponsors

Plant a tree for NMSG


Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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