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Nemaline Myopathy Foundation Newsletter #1

Issue #1, Spring 2003

Introduction

The NM Foundation was inaugurated on June 21st 2001 to raise awareness and funds for more research into nemaline myopathy.Nemaline myopathy shelters under the umbrella of the muscular dystrophies. Incidence of Duchenne MD can be between 1:3,000 (hereditary) and 1:12,000 (sporadic). Only one study of incidence for NM has been made and this gave an estimate figure of 1:50,000. Most doctors and associated health workers know very little about NM. Those who treat or care for a patient with nemaline go through a very steep learning process. Much of this new knowledge comes from the patient, or the only website dedicated to NM nemaline.org

This Newsletter is being published to keep "Friends of Nemaliners" informed of the activities of the NM Foundation as we raise awareness of this rare genetic disorder.Anybody wishing to subscribe to our mailing list should email us at: davidmcd@hotmail.com with the subject NMF Newsletter. Or write to us. Copies of the newsletter can be posted worldwide. But we would prefer to email your copy, because it's cheaper! We aim to produce the Newsletter quarterly to keep interested parties up to date on fundraising events and where monies have been spent.

NM Conference 2003

The first NM convention is being organised for September 2003. This important event will bring families and professionals together to discuss the latest research. Nemaline.org has the latest details. The conference organiser is David McDougall.

Note from our President

The Nemaline Myopathy Foundation was founded in June of 2001 as a "not-for-profit" organisation by individuals and families effected by nemaline myopathy (NM). The mission statement of the Foundation is to promote and support research into the causes, treatments, and cure for NM, to provide support and education for individuals and families effected by NM, to help improve the quality of life of those affected by NM, and to promote public awareness and understanding of NM.The Nemaline Myopathy Foundation raises funds to support these goals in a number of ways. One way is through payroll deduction at companies who have programs to allow for contributions to 501(c)(3) tax exempt organizations. Companies who have these programs in place often match employee contributions dollar for dollar. The Foundation also has fundraisers who are currently organizing a benefit dinner and auction to be held in March 2003 and is planning a garage sale, a golf tournament and a dance to be held later in the year. The NM Foundation has also been looking into coordinating with local schools and businesses to raise funds. Contribution cans are also being placed in various stores and restaurants. It is our belief that donations are largely tied to educating the general public about nemaline myopathy. So we are committed to raising awareness about NM in hopes this education will result in an increase in funding toward treatments and a possible cure. The Foundation has collaborated with local newspapers and radio stations who have generously agreed to advertise the dinner and auction over the air in conjunction with the timing of our fundraiser. The Foundation is also hoping to contact television stations in an effort to get some air time to educate the community about NM.If you are interested in learning more about how you can help the Nemaline Myopathy Foundation with fundraising efforts, you may email monette.smith@ni.com.

Board Members

  • 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)
  • Secretary : Lenora Nuspel

News from the Board

Our latest Board meeting was held on Sunday 15th December 2002. Members attending were Monette, Monica, Lenora, Albert and David.The meeting was held online using MSN Messenger, allowing us all to save the conversation to file for future reference. Minutes will also be written up using this file.

Decisions made were:

  1. Mechelle Ross voted onto the board.
  2. NMF letterhead and logo approved.
  3. Vote to purchase web space for the NMF.
  4. Election of Lenora Nuspel as the new Secretary for the NM Foundation
  5. Fundraising

The NMF logo can be seen above and the web domain name will be NemalineFoundation.comThe website is currently under construction and will be managed by Albert Smith with contributions from the other Board members.

Foundation ActivitiesThe first fundraising event is being organised by Monica. No date has been set, but hopefully it will be early in the Spring. Please refer to nemaline.org for the latest news.

Donations

In the meantime, any donations can be sent to the Foundation Treasurer at the address above. Thank you for taking the time to learn about us.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.

About the Board Members

Smith Albert and Monette Smith live in Texas with their sons Corbin and Christian who was born in November 1999 with severe NM.













Monica McMulin is Monette's sister and is involved with fundraising.

David McDougall has NM and lives in Scotland. He created the original website for nemaline myopathy in 1999 after realising there was very little information available to people dealing with NM. The website is now considered the official encyclopaedia for NM.

Lenora Nuspel is from Alberta, Canada and has two children with NM.

Mechelle Ross also has NM and lives in Maryland, USA.

Newsletter Editor: davidmcd@hotmail.com
© Nemaline Myopathy Foundation 2003

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 »»

Plant a tree for NMSG

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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.
Learn more »»