CENTRONUCLEAR AND MYOTUBULAR MYOPATHY INFORMATION POINT
United Kingdom

Established March 2001

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Muscular Dystrophy Campaign


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Since 17th August 2003

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How to Make a Donation


Muscular Dystrophy Campaign

Thank you to Catriona Thompson, Research Assistant, Muscular Dystrophy Campaign, UK
for providing this information

In the United Kingdom the Muscular Dystrophy Campaign (MDC) have a system whereby people can donate funds and specify what they wish the money to be spent on. MDC operate a peer review system for their grant awards. This means that the best quality of research is funded. If there was an application for research into Centronuclear / Myotubular Myopathy, which did not meet the standard, MDA would not fund it purely because funds are allocated for it. Instead, the funds would remain available until a suitable project came up. This ensures that the funds are guaranteed to go towards Centronuclear / Myotubular Myotubular Myopathy research, but also that you will be funding high calibre research.

Currently there are no research projects being undertaken - the next grant round begins in October 2004.

The Joshua Frase Foundation

The Joshua Frase Foundation is dedicated to supporting ongoing medical research for Myotubular Myopathy and other related congenital myopathies. Ongoing research is needed to discover causes of and cures for this deadly disorder. Rather than concentrating in only one area of study, a team of leading researchers has been assembled who will try to combine their respective different areas of expertise into a multi-faceted approach aimed at understanding the pathophysiology of myotubular myopathy so that effective therapies can be formulated. Leading the research is Louis Kunkel, PhD who is world-renowned in the field of neuromuscular disease research. Dr. Kunkel discovered the gene for muscular dystrophy and is overseeing human trials of limb Girdle Muscular Dystrophy.

Click here to make a donation to the Joshua Frase Foundation

Muscular Dystrophy Association

Thank you to Sharon Hesterlee of MDA USA for providing this information

To accommodate donors wishing to support disease specific research or the research of a particular investigator, some time ago MDA instituted a procedure whereby gifts could be channeled through the Association and be restricted for a specific research-related purpose.

MDA’s policy relating to the administration of earmarked gifts.

1. Any gifts channelled through the Association and restricted for a specific researcher will be remitted immediately by MDA in full to the designated investigator;

2. MDA respects the sensitive relationship between donors and beneficiaries and, therefore, the Association will not approach such donors independently as potential contributors;

3. Earmarked gifts will not have a bearing on MDA’s existing level of funding of scientific projects or clinic programs. Such gifts are independent of all other Association support;

4. Gifts in any amount will be accepted and need not be major gifts;

5. Channeling restricted gifts through MDA is mutually beneficial in that it offers a mechanism for clinicians to encourage those wishing to support scientific research to direct such gifts to neuromuscular diseases through MDA’s program. In doing so investigators at university-based research facilities may be able to take advantage an Association policy which limits to 10% the amount of an MDA research grant that may be allocated to indirect costs, thus allowing more to be applied directly toward the research project.

All that’s required for the donor to restrict a gift is to have specifically stated on the check or in a separate letter that the gift is earmarked for the research or program of the recipient. Of course the gift through MDA would be fully tax deductible. You may retain full control of and track earmarked gifts by having them sent directly to you for transmittal to MDA.

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