NINDS and Octanoic Acid Update

NINDS and Octanoic Acid Update

On behalf of Tremor Action Network (TAN) I recently met with Dr. Gwinn, Program Director, Extramural Research Program.Also in the meeting were Dr. Ashlee Van’t Veer, Program Analyst Division of Extramural Research Neurogentics Cluster and Dr. Robert Zalutsky, NINDS Office of Science Policy and Planning. Dr. Zalutsky is interested in essential tremor (ET) because it is the most common movement disorder, yet it is not given the support it needs. He would like to see diseases handled by their impact more than by their public profile. Dr. Zalutsky and Dr. Gwinn also talked about how people minimize essential tremor by using “benign” or saying Deep Brain Stimulation (DBS) can fix it. They agreed minimizing the disease has to stop. Awareness of the difficulty of tremor in our everyday lives needs to be communicated.

One of the topics of conversation was the May 2015 Report on Essential Knowledge Gaps in the Field of Essential Tremor Workshop. Dr. Gwinn was apologetic that not all essential tremor advocacy groups were included. She promised that NINDS would do better to make sure that all advocacy groups listed with them are included in workshops and sharing information. When NINDS releases the white paper from the May workshop, Dr. Gwinn will let TAN know.

This led to a discussion on the need for collaboration between NIH and all advocacy groups, big and small, and collaboration between the groups themselves. We talked about the TAN blogs. As soon as we get information, we share it publically. We learn it; we share it. We discussed how collaboration is the key in overcoming the lack of awareness we face. Everyone in the room agreed that social media is the best way of sharing information and raising awareness.

Dr. Gwinn suggested that essential tremor patients become familiar with NINDS is remodeling their website. It will take at least a year. At this time, the site is somewhat hard to navigate and find information. She suggested using NIH Reporter for information. She stated that across all the NIH facilities there are currently 54 projects budgeting more than 21 million dollars working with tremor.

The December 2013 Spikes and Spasms newsletter contained an article about the octanoic acid trials that quoted Dr. Zalutsky. I followed up with Dr. Zalutsky to see if there was any new information. He said, “There is nothing significant to update on octanoic acid at this point.  They have not found a pharmaceutical company to take on development so they are considering how to move forward but don’t have a clear plan at this point.”

Useful information links:

May event:
Essential Knowledge Gaps in the Field of Essential Tremor

Follow tabs at the top of the event page to:
General Information
Agenda including Speakers

Twitter links:
Main page for NIH @NIH
NINDS Small Business @NINDS_Smallbiz
Latest NINDS research, news, and events @NINDSnews
NIH Director Dr. Francis Collins @NIHDirector

TAN Blog Editor
Nannette Halliwell

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