There are a number of ways that donations can be made to help those with
Centronuclear and Myotubular Myopathy.
The Myotubular Trust is a European charity which has been set up with the aim of raising money for research and beginning the
process of finding a cure for the condition. The Trust benefits from the scientific advice of Professors with expertise in this condition, including Professor V. Dubowitz, Emeritus Professor of Paediatrics and
Professor F. Muntoni, Professor of Pediatric Neurology at Imperial College, London, one of the largest Paediatric Neuromuscular Units in Europe which has been designated by the Department of Health as the National Reference centre in the UK for a series of congenital neuromuscular disorders.
- Muscular Dystrophy Campaign (UK)
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.
MDC are undertaking no research projects at this time.
The Beggs Laboratory studies all the congenital myopathies but has a particular focus on CNM / MTM; the research done by the Beggs Laboratory has no international borders, so patients anywhere in the world benefit equally - the cost of research is about $500 per fifteen minutes so donations are extremely important if a cure is to be found.
Donations can be made in the following ways:
By mail to Children's Hospital Trust, Attention: Donna Richardson, 1 Autumn Street, #731
Boston, MA 02215-5301.
or
By credit card via the web:
The giving page now features a drop down menu enabling donations to be made directly to the Beggs Laboratory and donations for research into Centronuclear and Myotubular Myopathy can be specified in the comments box.
If you choose to donate in this way please remember to state that you are donating through the Information Point website. Should the website and shop be able to raise $25,000 it will be possible for us to create a named fund.
- 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.
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.
