Nemaline Myopathy - The Official Website

Introductions	Research	Resources	Miscellaneous
What is NM? Introduction Deutsche Espana Francais Italiano Other languages Publications (May 5) NM Newsletter #1 NM Newsletter #2 Everybody's Different (Jan. 11)	Genetic testing (Feb. 8) Dr. A. Beggs (June 17) Prof. N. Laing (Jan 12) Prof. K North (Jan 12) Assoc. Prof. Ottenheijm (Jan 12) Dr. C. Wallgren-Pettersson (Jan 12 ) Research projects (Jan. 29) ENMC (Aug. 25) Science papers online (Ja.n 26) NM Convention 2004 NM Convention 2007 NM Convention 2009 NM Convention 2011	Advice (Jan. 25) Explaining March 9) Therapies (Aug. 16) Medical assistance (May 28) Patient care (May 5) Webpage for SLONM (June 8) NM Support Group (Mar. 20) NM Foundation (Aug. 25) A Foundation Building Strength (Feb. 13) Retailers/Suppliers (March 24) Travel/Holiday/Insurance advice (March 24 ) Emergency lists for travel Ventilator agents Drugs and supplements (Jan. 13)	Nemaliners around the world (Jan 12) Nemaliners Meetings (Jan. 28) Personal webpages and media stars (Jan 12) Photos Poetry Professions of a Nemaliner (Jan 12) Click here to take a genetics quiz! Memorials (Jan. 19) Fundraising (May 19) Plant a tree for NMSG (April 15)

Guestbook
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Recent new photos
Megan Ladwig
Manny Echevarria
Skyler Sauls
Katie Mitchell, USA
Matthew Hutcherson

Exclusive article
Possible cure for actin mutation

First ever
NM Convention ( 2004)
helps researcher!
Invited speaker makes interesting discovery.

To date, over 600 people have contacted me from 50 countries. See Around the world for a breakdown.
Argentina, Australia, Austria, Bahrain, Belgium, Brazil, Burma, Canada, Chile, Cuba, Denmark, England, Estonia, Finland, France, Germany, Greece, Hawaii, Hungary, Hong Kong, Ireland, India, Iran, Israel, Italy, Japan, Korea, Latvia, Malaysia, Mexico, Netherlands, Norway, New Zealand, Pakistan, Palestinian Authority, Panama, Portugal, Romania, Saudi Arabia, Scotland, Senegal, South Africa, Spain, Sweden, Switzerland, Turks & Caicos Islands, Turkey, Uruguay, USA and Wales.

This page was last updated: January 22, 2012
© David McDougall. 1999-2012
Contact: davidmcd_@hotmail.com. All received emails will be answered. (Please quote Nemaline Myopathy in the subject line.)

Disclaimer
This web site is here as a starting point for anyone seeking more information about nemaline myopathy and contacting other families whose lives are effected by it. The details provided and linked to this site are for information purposes only. All information is provided in good faith and with the understanding that I do not offer medical or professional services, of any kind. It is recommended that you should not use the information without consulting your doctor. No warranties of any kind, are expressed or implied. I do not accept liability for any loss or damage resulting from the use or misuse of any info contained on this site, nor for any errors or omissions. Basically, use this site at your own risk! Surfing this website can seriously increase your knowledge of NM. ;-)

This is NOT a medical site. It is intended for informational purposes only. Please contact your medical professional if you have questions about your specific condition.

Links on this site have been included as areas of possible interest. I cannot vouch for the accuracy or suitability of information you may find on them, or on sites linked to them. Information may concern prognoses and must be treated with sensitivity. Be VERY wary of any site that offers treatment or cures and always ask for independent, professional medical advice before you contact a site of this type. If you are not medically qualified and find an item that worries you please discuss it with your doctor.

The original encyclopaedia for NM Uniting families, doctors, support professionals and scientists. This web is for anyone seeking information about the rare genetic disorder nemaline myopathy, (aka nemaline rod myopathy or rod myopathy). If you have NM, or you are a parent, guardian, professional or friend who cares for someone with it, then there are new friends out there who wish to hear from you. Learn from those who know the game.	NM Support Groups song: You've Got A Friend A Nemaliners aim is to: Search For The Hero	Born: July 18, 1999 Updated: January 22, 2012 Relaunched: November 11, 2001 The Nemaline Myopathy Support Group subscribes to the UK's Genetics Alliance.
Email Chatgroups Active Family Discussion Group (220+ families subscribed.) 10-25 Year Olds Group SLONM Espana egroup por MN Deutsche Chat-Gruppe Gruppo italiano di chiacchierata Facebook NM Global Awareness (600+ member) Family and friends join the official group	Some people have reported to me about warnings from Google of trojan viruses being attached to this website. Please be assured that I have the latest McAfee antivirus updates. I also use Malwarebytes Pro and CCleaner weekly. Malwarebytes often blocks trojan files trying to enter my PC. According to ShieldsUp my PC is in Stealth mode and is invisible from outside my network! I recommend you try these programs. All have free copies to use. David McDougall (12.01.12) Plant a tree for NMSG Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.	Book Launch No Cure, No Surrender Ken Hobbs autobiography Latest Nemaliners news Realyn Kanak on MDA Telethon 2011 Webpage for SLONM Brittany Beech meets One Tree Hill Latest science news The recent webinar on scoliosis is now available online for you to listen to at your leisure. Just click on this link and accept any changes requested. The program will start downloading, and eventually a screen will appear. The recording may take a few minutes to start as it may need to buffer the data before it plays. I don’t know how long the recording will be available online.