Advancing the Knowledge of Peripheral Neuropathy and HSAN1

May 30, 2018

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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In The News

Freelance journalist Karen Weintraub attended the Deater Family Reunion in 2017 where she met members of the family with the disease HSAN1. She followed the family of Eric and Cindy Newcomer as they visited Dr. Anne Louise Oaklander at Massachusetts General Hospital to have their teenage daughters tested. She also interviewed other family members, Dr. Oaklander, and Drs. Robert Brown and Thornsten Hornomann, researchers of the disease.

Her extensive article was published in the on-line journal “STAT” on August 14, 2017
https://www.statnews.com/2017/08/14/rare-disease-neuropathy-deater/  The article, excerpted here, focuses on the hopes and challenges of the next generation.

“Eric Newcomer, whose symptoms forced him to leave his job as an electrician, wants affected families to test and track their children. He’s starting with his own. His daughters are just teenagers, but they’re already well-versed in the family tradition of submitting to medical tests. Twice this summer the girls have made the trek to Massachusetts General Hospital in Boston for an array of balance and sensory tests. In the second round of
testing, Dr. Anne Louise Oaklander, a neurologist, took a 3-millimeter bit of skin — about the size of a stud earring — from each girl’s lower leg.

Oaklander and her team

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