Fridman, Vera et al “Randomized trial of l-serine in patients with hereditary sensory and autonomic neuropathy type 1.” Neurology 92.4 (2019): e359-e370. Web. 21 Jan. 2019.
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,