Advancing the Knowledge of Peripheral Neuropathy and HSAN1

Eric Newcomer, President, Deater Foundation, Inc.

Last year my family traveled to Boston to meet with Dr. Oaklander so that my children could participate in
some of the same testing that was performed during the L-Serine supplementation study that many Deater
family members participated in. The goal is to follow young people that are at risk for HSAN1 and gather
information about when symptoms start and how they progress. Dr. Oaklander is willing to followthem
regardless of whether they have been genetically tested, are symptomatic, choose to be treated, or
even if they ever want to know if they carry the mutation.

The Deater family is unique in that we can provide affected and unaffected as well as treated and untreated people, which could prove invaluable in the search for answers. Dr. Oaklander suggests that anyone who chooses to start treatment do so under the care and supervision of an experienced nerve specialist. Anyone is welcome to contact me at ericnwcmr@gmail.com or Dr. Oaklander at aloaklander@mgh.harvard.edu if you have any questions. A good website to check out from the Massachusetts General Hospital is www.neuropathycommons.com.

While traveling to Boston we had the opportunity to meet with a journalist, Karen Weintraub, 

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Future Conference Plans

Plans for a 3rd HSAN1 conference sponsored by the Deater Foundation

The Deater Foundation has sponsored 2 HSAN1 international workshops, in 2008 and in 2010. The first set the research community on the path to investigate the possibility that the gene defect in HSAN1 involved the creation of a substance toxic to nerves. The second conference proposed that supplementation of L-serine might have positive results on the symptoms of the disease.

These conferences are extremely valuable in bringing together researchers from around the world who are each experts in their fields. Dr. Brown proposed last fall that another conference within the year would be a valuable platform to move HSAN1 research forward. This year’s conference will take place in the Boston area November 14-16. Invitations have been extended to “The Molecular Pathogenesis and Therapy of HSAN1″. As of June 2, 2013, the following plan to attend: Dr. Kurt Fischbeck, National Institutes of Health; Dr. Garth Nicholson, University of Sydney, Australia; Dr. Marc Freeman, UMass Medical School; Dr. Mary Reilly, National Hospital for Neurology, London; Dr. Vincent Timmerman, University of Antwerp, Belgium; and Dr. Anne Louise Oaklander, MGH. These researchers will bring an immense and varied amount of expertise to share.

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