Nemaline Myopathy Support Group

Fundraising

NM Foundation (www.nemalinefoundation.org)

Board of Directors

  • President and Treasurer : Monette Smith (USA)
  • Vice President : Albert Smith (USA)
  • Vice President : Monica McMulin (USA)
  • Vice President : David McDougall (Scotland)
  • Board Member : Mechelle Ross (USA)
  • Board Member : Kelly Fuerst (Canada)
  • Board Member : Heather Williams (USA)

Why We Are Here

The NM Foundation was inaugurated as a "not-for-profit" charity on June 21st 2001. We aim to raise awareness and assist more research into nemaline myopathy. We have also been the major sponsor of four very sucessful international conferences where families and professionals dealing / working with nemaline myopathy get together to share and learn from each others experiences.

Further details on NMC meetings.

If you would prefer your donation to go towards helping families or individuals with NM, then please consider the NM Support Group.

Mission Statement

The Nemaline Myopathy Foundation is an organization created by adults with NM and families of those affected by Nemaline Myopathy. The Nemaline Myopathy Foundation is committed to:

  • Promoting and supporting research into the causes, treatments, and cure for Nemaline Myopathy.
  • Providing support and education for those affected by Nemaline Myopathy.
  • Improving the quality of life of those diagnosed with Nemaline Myopathy.
  • Promoting public awareness and understanding of Nemaline Myopathy.

The Nemaline Myopathy Foundation is a tax-exempt 501(c)(3) organization. In compliance with the provisions of section 501(c)(3) of the Internal Revenue Code, funds will be distributed exclusively for charitable, scientific, educational, or literary purposes.

Please join us in our struggle living with Nemaline Myopathy.

Donations

Donation checks/cheques should be made out to Nemaline Myopathy Foundation or NM Foundation and addressed to:

The Treasurer:
Nemaline Myopathy Foundation
P.O. Box 5937
Round Rock
TX 78683-5937
USA.

The NM Foundation is recognized in the USA as tax exempt under section 501(c)(3) of the Internal Revenue Service code. Therefore, donations and contributions are tax deductible for tax payers in the United States of America. The tax ID code for Nemaline Myopathy Foundation is 74-3006187.

Monette   Monette is a qualified accountant with a large US company, and lives with her two sons in Texas. Christian has severe NM and requires care 24/7.


DavidMcD   David lives in Scotland and has had mild NM since birth in 1964. He created the nemaline myopathy website, several Yahoo chat groups, Facebook groups, and the international NM Support Group. David also instigated and co-organises the series of international NM Conferences. He has flown to Florida, Michigan x2, New York, Toronto x3, and Spain x2, to meet people with NM. Retired in 2006, David now divides his time between working for the NM community and trying to grow money from trees on an acre of land. More on Dave here.


Mechelle   Mechelle is a retired lawyer, now living the quiet life by the beach in North Carolina with her parents and young dog.


Kelly   Kelly hails from Manitoba with her son Emmett, and husband Dwayne. As a school teacher, Kelly is devoted to Emmett's education, health and development into a well rounded young man.

Nemaline Myopathy Foundation

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The Nemaline Myopathy Foundation is an organization created by adults with NM and families of those affected by Nemaline Myopathy.
The NM Foundation was inaugurated as a "not-for-profit" charity on June 21st 2001. We aim to raise awareness and assist more research into nemaline myopathy.
Learn more »»