The Myotubular Trust promotes the relief of disability and the extension of life for those suffering from myotubular myopathy, by promoting the study of, and research into, the treatment and cure of the muscle weakness caused by myotubular myopathy
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Myotubular Myopathy - Myotubular Trust Fundraising, Donation and Research | myotubulartrust.com Reviews
https://myotubulartrust.com
The Myotubular Trust promotes the relief of disability and the extension of life for those suffering from myotubular myopathy, by promoting the study of, and research into, the treatment and cure of the muscle weakness caused by myotubular myopathy
myotubulartrust.com
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 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 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 - Myotubular Trust Fundraising, Donation and Research
http://www.myotubulartrust.com/index.htm
CATALONIAN FUNDRAISER INSPIRED BY LLUC. Jordi, Dani, Lluís and Gerard arranged a minority race for a rare disease which took place on Saturday 16th July in Catalonia, Spain…. MARK'S DERWENT WATER EPIC SWIM. Mark completes the 3.8km Derwent Water epic swim in honour of his lovely grandson, Reece…. NICK'S LONDON MARATHON 2016. Nick Thomas ran the London Marathon in support of the Trust after it was chosen as one of his employer’s charities of the year…. 10 BRIDGES FOR 10 YEARS. MAY THE FORCE BE WITH YOU.
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Links » Net Communications
http://www.netcom.co.uk/links
Email: admin@netcom.co.uk. Net Communications (ISP UK) 2016 "We Deliver Effective Business Internet Solutions to Relevant Audiences at a Realistic Price." Terms and Conditions.
stephaniewheelerassociates.co.uk
Stephanie Wheeler Associates Ltd - About us
http://stephaniewheelerassociates.co.uk/charity.asp
Stephanie Wheeler is an active supporter of the Myotubular Trust. About Myotubular Trust - http:/ www.myotubulartrust.com. Like all rare diseases it is very difficult to attract research funding for Myotubular Myopathy, despite the severity of its impact on the children affected. The Myotubular Trust has been set up therefore to raise those funds and begin the process of finding a cure for the condition. Website design and development - smoove interactive.
General Resources - Audentes Advocacy
http://audentespatientadvocacy.com/about/resources
Sign Up for Updates. Be included in our updates. Subscribe for updates, including new stories. Courageous Patients. Bold Effort. European Organization for Rare Diseases (EURORDIS). National Organization for Rare Disorders (NORD). National Society of Genetic Counselors. NIH Genetic and Rare Diseases Information Center. National Institute of Neurological Disorders and Stroke, NIH. Online Mendelian Inheritance in Man (OMIM). Congenital Muscle Disease International Registry (CMDIR).
Historie » Myotubuläre Myopathie
http://mtmx.de/historie
Gründung der Joshua Frase Foundation. Und Förderbeginn der Forschung auf dem Gebiet der X-linked Myotubulären Myopathie (XLMTM) und verbundener neuromuskulärer Erkrankungen. Mehrere neue Muskel-Gene wurden entdeckt, analysiert und ihre Beziehung zu angeborenen Myopathien untersucht. Es folgen Analysen der Muskeldefekte im Bereich X-chromosomal myotubuläre und zentronukleäre Myopathien. Entdeckung von DNM2, ein neues Gen der zentronukleären Myopathie. Gründung der Myotubular Trust. Für betroffene Familien...
The wonderful Joshua… | Celebration of the life of Joshua Seville
https://joshuaseville.com/2011/07/17/celebration-of-joshua
Celebration of the life of Joshua Seville. Loving memory of a wonderful Son who inspired many. Skip to primary content. Your memories of Joshua. The wonderful Joshua…. July 17, 2011. Joshua was an amazing boy who, although having Myotubular Myopathy. Had a passion for life. He enjoyed 11 wonderful years and rushed at life head on, giving all his strength to having fun. Science, reading and computers, to name but a few. He spent 7 happy years in mainstream school and made some fantastic friends. August 16...
Resources - MTM-CNM Family Connection
http://www.mtm-cnm.org/resources.html
Myotubular Myopathy and Centronuclear Myopathy Resources for Families. Links to resources, friends, collaborators, and partners in the journey. Get our email newsletters. Family Guide to Myotubular Myopathy. Click image to download pdf file). Written by parents, for parents, this is our community's "MTM 101". From our friends at CureCMD. Here is a comprehensive guide for care of all forms of Congenital Myopathy. (click image, then scroll down to "The Care of Congenital Myopathy: A Guide for Families".
Urban Reef Charities
http://www.urbanreef.com/charity
Here at Urban supporting local charities and organisations is very important to us. Over the past couple of years across both Urban Beach and Urban Reef we have supported the following (to name just a few! By providing raffle prizes:. 8226; Bournemouth People First: www.bournemouthpeoplefirst.co.uk. 8226; Dorset and Somerset Air Ambulance: www.dsairambulance.org.uk. 8226; John Thornton Young Achiever's Foundation: www.jtyaf.org. 8226; Julia's House Children's Hospice: www.juliashouse.org. To subscribe)&#...
Management Board – ZNM – Zusammen Stark! e.V.
http://www.znm-zusammenstark.org/en/management-board
X-linked Myotubular Myopathy (MTM1). Autosomal-dominant Centronuclear Myopathy (DNM2). Autosomal-recessive Centronuclear Myopathy (RYR1, BIN, TTN). Which help is there? Patient registry and studies. Downloads (Deutsch & English) & short films. Network of doctors and therapists. President: Dr. Holger Fischer. My name is Holger Fischer. With my wife Jennifer Bilbao I live in Stuttgart. Our son Emil. However, he is still with us in our hearts and shall encourage everyone to help the other people with CNM...
Charities
http://www.thekindergartens.com/index.php/information/charities
The Kindergartens support a wide range of charities to encourage the children to have an understanding of helping others. Friends of Battersea Park. Shelter box for Philippines. The Kindergartens Ltd. 2006 - 2014.
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MYOTT STUDIO + ARTIFACTS
A R T W O R K . A C C E S S O R I E S. WE NOW HAVE TWO LOCATIONS! MYOTT STUDIO {WESTSIDE} & ARTIFACTS {EASTSIDE}.
* HANDMADE * FASHION * ART *
HANDMADE * FASHION * ART *. 01 stycznia, 2012. Niedawno pochwaliłam się Madzie. Że spróbowałam z sutaszami no musiałam obiecać, że wrzucę fotki. W Nowy Rok, żeby nie było, że obietnic nie dotrzymuję fotki lądują na blogu. Klipsy i broszka absolutnie pierwsze sutasze, proste wzory lecz krzywe wykonanie:]. Kolejna zrobiona przeze mnie rzecz to ta broszka:. Wiem, że to wszystko jest jeszcze krzywe, nitki wystają itd. ale cóż, uczę się dopiero :). Linki do tego posta. 26 grudnia, 2011. Dobra, dobra, dobra.
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Gentaur
This website is under construction, please check back later :). You can visit us without notice every working day from 8:00 until 19:00. Research is located in:. 1910 Kampenhout, Belgium. 8226; We offer 100 of different brochures for your projects. 8226; You can discuss your custom projects. 8226; Show us your results for technical support. 8226; We will help you choose your products - You can take them to your lab the same day! 8226; We have a lot of free samples available to test.
myotubulartrust.co.uk
Myotubular Myopathy - Myotubular Trust Fundraising, Donation and Research
How you can help. 2015 London 10k Run. Another great turn out for the 10th Myotubular Trust 10k run read more. BOB S WRITING SKILLS RAISE A BOB OR TWO. Sale proceeds of A Short History of The City of Leicester College written by our supporter, Bob Childs, raise a significant amount of money for the Trust read more. 2015 Hope Walk Weekend. Dr Ana Buj Bello, Myotubular Trust grant recipient, receives Outstanding New Investigator Award from the American Society of Gene and Cell Therapy. read more. Myotubula...
Myotubular Trust | Finding Strength
Collaboration With Leading Research Charity. Two New Research Projects Funded. Three Complementary Myotubular Trust Research Projects. Myotubular & Centronuclear Myopathy. People behind the trust. Our story in film. Trials & Studies. Myotubular and Centronuclear Myopathy. Causes life-threatening muscle weakness in infants and adults. In the weakest form. A baby is at severe risk of dying in the first weeks of life. Since 2006 we have led the way. In supporting families and investing in research. Together...
myotubulartrust.org.uk
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