JTSMA Research Page

An Introduction and Index to our pages on research into SMA
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Introduction
Since the Jennifer Trust was founded in 1985 it has always been a support group for families with Spinal Muscular Atrophy. In order to provide the best support possible the Trust has, for some time now, also been providing some of the funding for research work into the genetics of Spinal Muscular Atrophy in the hope that better knowlege will provide improved treatment of the condition; this work has already resulted in pre-natal testing for the genes responsible and is going some way towards an understanding of the varying severity of their effect.

The Jennifer Trust also provides funds for research into the most suitable medical and therapeutic treatment for people with Spinal Muscular Atrophy. Successful applications to the Trust include a project to analyse the effects of seating posture on spinal deformation, and a project to ascertain the benefits from various respiratory equipment for people with SMA.

The benefits of this research are greatly improved by getting the professionals, whose daily work is to treat people with Spinal Muscular Atrophy, together to discuss the findings and their experiences. The Trust, therefore, organises conferences to disseminate information and provide a forum for this discussion. The Annual Conference provides an open meeting at which an update on the genetic research is provided, a speaker gives a talk on some clinical aspect of SMA, and families with SMA are able to share their hard earned knowlege in both a formal and informal environment. The Jennifer Trust also organises an ongoing series of conferences for clinicians to establish the basis of good practice in treating the respiratory aspects of SMA, and in 2001 the Trust will be hosting an international conference for support groups in Stratford upon Avon.

The Jennifer Trust is only able to support these projects through the efforts of our fundraisers . . . thank you all, the money being raised is working very hard!

If you would like to help fund this research and the other work of the Trust CLICK HERE.


Index to pages
As we publish articles they will be added to this index. Each page on this site has a link at the bottom to bring you back here.

10th December 2001
23rd October 2001
25th May 2001
There is more good news in research into SMA. Scientists at the University of Pennsylvania have found evidence in cell cultures that 2 vitamins may lessen some of effects of SMA. These 2 vitamins are B12 and Folic Acid. These tests were done in the lab in cell lines and have not been tested yet in humans. Researchers emphasize that this is not a cure for SMA, but it may help. Further investigations will proceed very soon.
The entire press release and a discussion of the implications of these findings (as well as other research news) can be found on our web site.
7th February 2001
30th January 2001






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© JTSMA December 2000