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Myotubular and Centronuclear Myopathy Patient Registry – Accelerating the pace of research and treatment for MTM and CNM.Accelerating the pace of research and treatment for MTM and CNM.
http://www.mtmcnmregistry.org/
Accelerating the pace of research and treatment for MTM and CNM.
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Myotubular and Centronuclear Myopathy Patient Registry – Accelerating the pace of research and treatment for MTM and CNM. | mtmcnmregistry.org Reviews
https://mtmcnmregistry.org
Accelerating the pace of research and treatment for MTM and CNM.
Myotubular myopathy research resources
http://www.myotubulartrust.com//talk-resources.htm
The Information Point for MTM/CNM. Myotubular Myopathy Yahoo Chat Site. Standards of care for congenital muscular dystrophy. British Thoracic Society Guidelines for respiratory management of children with neuromuscular weakness. Supporting families with children who need help to breathe). Ventilation advice from Brompton Hospital. Guidance on breathing and non-invasive ventilation (NIV) for children from the age of two years old living with a neuromuscular condition. M Chatwin et al (2010). Scientific Ad...
Myotubular myopathy about the Myotubular Trust
http://www.myotubulartrust.com/about-us.htm
What is Myotubular Myopathy? History of Myotubular Trust. People behind the Trust. About the Myotubular Trust. What is Myotubular Myopathy? There are three genetically distinct forms of Myotubular Myopathy. Source: PubMed 2002 Genotype-Phenotype Correlations in X-Linked Myotubular Myopathy PMID 12467749. Each year, it is estimated that between 1 : 50,000 – 1: 100,000 children are affected by myotubular myopathy. Only 20% of boys born with x-linked myotubular myopathy survive to one year of age. Founding ...
Myotubular Trust Fundraising, Donation and Research, News
http://www.myotubulartrust.com/news_stories/rare-disease-week.htm
How you can help. Read preview of all news. House of Commons - Rare Disease Week. Justin Webb, presenter. From BBC Radio 4's Today programme. Jane Ellison, MP, Minister for Public Health. Professor Francesco Muntoni, Head of the Dubowitz Neuromuscular Centre, Great Ormond St., London and Chair of the Myotubular Trust Scientific Advisory Board. Dr Anna Buj Bello, Genethon, Paris, recipient of the first Myotubular Trust research grant in 2008 (with her proud son, Victor! Founding Patron: Professor Victor D...
Myotubular Trust Fundraising, Donation
http://www.myotubulartrust.com/donate.htm
Donate Now £. Donate Now €. Please donate online now. Just click the mouse icon and follow the instructions for a secure way of paying money directly into our CAF bank account via debit or credit card. Please remember to tick the gift aid box if you are a UK taxpayer as this will enable us to claim back tax of 25p for every 1 donated, at no extra cost to you. Thank you. Donations are very important to us, thank you for helping. Please download this Gift Aid Form. Donate By Standing Order. Assuming all do...
Myotubular myopathy fundraising 20k walk
http://www.myotubulartrust.com/fundraising_hope_walks.htm
How you Can Help. London 10 Bridges Walk. Fundraising - Hope Walk Weekends. Each year since 2008, different groups of supporters have taken part in sponsored walks one weekend in May. We all walk with the same hope in mind – raising research funds to find a cure or treatment for myotubular and centronuclear myopathy. A big thank you to all our Hope Walkers who took part in weekend walks around the country in May. Join us in a sponsored Walk of Hope. We will help you plan your Hope Walk. Our wonderful sup...
Myotubular myopathy fundraising London 10K run
http://www.myotubulartrust.com/fundraising_london10.htm
How you Can Help. London 10 Bridges Walk. Fundraising - London 10K. Sign Up For the London 10K Run, Sunday 10th July 2016. Participate in an annual event that takes you around the historic sights of central London. In ten years, the London 10k run has raised £200,000 in research funds for the Myotubular Trust. Over 325 people have run on our behalf, many having run more than once. It's a great event for runners of all abilities. Sign yourself up online now at www.thebritish10klondon.co.uk. One of our run...
Myotubular Trust Fundraising, Donation and Research, News
http://www.myotubulartrust.com/news_stories/bobs-writing-skills.htm
How you can help. Read preview of all news. BOB S WRITING SKILLS RAISE A BOB OR TWO. By taking on the task of writing A Short History of The City of Leicester College , Myotubular Trust supporter Bob Childs has raised a significant amount of money for both the Trust and Muscular Dystrophy Campaign. Bob has centronuclear myopathy and is a wonderful supporter of both charities. Thank you so much Bob for all that you continue to do. UK Registered Charity No: 1137177 (formerly 1113809).
Myotubular myopathy family stories
http://www.myotubulartrust.com/family-stories.php
Nathan, Sean and Alex. Have you been affected by myotubular myopathy? Do you have a story which you would like us to include here? Please email melaniespring@myotubulartrust.org. If you would like to share your story. UK Registered Charity No: 1137177 (formerly 1113809). Founding Patron: Professor Victor Dubowitz, Emeritus Professor of Paediatrics, Imperial College London; President of World Muscle Society. Design by Insignia Creative. Hosted by Net Communications.
Myotubular myopathy fundraising your own event
http://www.myotubulartrust.com/fundraising_events-in-2011.htm
How you Can Help. London 10 Bridges Walk. Fundraising - Calendar of Events. Tenth Anniversary Walk - 10 years, 10 bridges, 10 miles. Date: Saturday 21st May 2016. Description: Myotubular Trust's very own London walk - be part of something special during our 10th year! Date: 21st and 22nd May 2016. Description: Myotubular Trust's very own arranged walk - be part of something special! Notes: Join a walk or why not be inspired to arrange your own? Myotubular Trust British London 10K Run. Notes: Entry fees v...
Myotubular Trust Sponsors
http://www.myotubulartrust.com//corporates.htm
Design Your Own Event. Give As You Earn. Corporate Fundraising has huge benefits for everyone. It promotes goodwill and unity among your employees, boosting staff morale. But above all, the help and funding you can provide to a smaller charity for a rare genetic condition like myotubular myopathy, has the potential to make real life-changing differences to the many children and few adults affected by it. It provides them with real hope for a chance of life. Charity Of The Year'. A Big Thank You From Us.
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Thursday, December 15, 2011. Fall A Couple Months Later. So I went on this hike with my siblings and the husby and I took my camera with me so I could take all these pictures and then come home and blog about it! I was so excited and I took lots of pictures. but I never did a blog post. Fail! So I am doing it now. a couple months later. Hopefully it will give us a little warmth during this frigid Logan weather. Tyson's brother Derek came too. The dogs had fun too! Megan and Tyson McMurdie. Chris McClain ...
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Myotubular and Centronuclear Myopathy Patient Registry – Accelerating the pace of research and treatment for MTM and CNM.
Myotubular and Centronuclear Myopathy Patient Registry. How clinical trials work. The Myotubular and Centronuclear Myopathy Patient Registry. Also referred to as the. And Muscular Dystrophy UK. This patient registry will:. Help identify patients for relevant clinical trials as they become available. Encourage further research into myotubular and centronuclear myopathy. Provide researchers with specific patient information to support their research. We welcome the registration of:. If these categories don...
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