Research Progress Report 2012
Submitted by: Ellen Deater Burns, Medical Liaison
Shortly after the Deater Family Reunion in July, 2011, Larry Deater and Ellen Deater Burns traveled to Boston to meet with Dr. Eichler. We shared some concerns that the Deater Foundation had contributed $30,000 in January to the proposed research on Hereditary Sensory and Autonomic Neuropathy Type 1(HSAN1) and it seemed to us that the movement toward a study involving serine supplementation effects on people with HSAN1 was painfully slow.
Dr. Eichler had constructed a placebo controlled double blind study to meet the funding qualifications of large organizations such as the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Unfortunately, funding from those sources, which looked promising initially, has not materialized. The smaller trial of 5 persons affected with HSAN1 receiving serine supplementation was also off to a slow start. One of the criticisms that Dr. Eichler received from the FDA was the high cost of the L-serine. His team “shopped around” for a lower priced, high quality product. The L-serine had to be vetted by the pharmacists at Massachusetts General Hospital (MGH) to meet the same quality standards as the L-serine used in the first 10 week trial.