Community participation opportunity for NIH Leadership Council

The National Advisory Council of the National Institute of Neurological Disorders and Stroke Council (NINDS)—part of the National Institutes of Health (NIH)–will meet in Bethesda, Maryland on September 12-13 to discuss upcoming programs, strategic planning, and future operations of NINDS.

The Council, which is part of National Institutes of Health and Department of Health and Human Services, invites the participation of ME/CFS community members to participate in the open session on Thursday from 10 am – 3:30 pm EDT.

National Advisory Neurological Disorders and Stroke (NANDS) Council

203rd Meeting

Building 31, C Wing, 6th Floor, Conference Room 6

31 Center Drive

Bethesda, Maryland 20892

The proceedings may also be viewed remotely via the NIH Videocast Website:

http://videocast.nih.gov/

The Council advises The National Institute of Neurological Disorders and Stroke (NINDS) on policy and procedures affecting the extramural research programs and provides a second level of review for all grant and cooperative agreement applications considered by the Institute for funding. As all matters concerning ME/CFS at the NIH are directed to NINDS, Council meetings such as this are significant.

NINDS is one of 27 institutes and centers that make up the National Institutes of Health and one of the leading institutes for myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS). The director of NINDS, Dr. Walter Koroshetz is the chair of the Trans-NIH ME/CFS working group.

We believe community participation in discussions on a federal level is particularly important now in the wake of the recent dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC). CFSAC was the ONLY federal entity focused entirely on ME/CFS, and the ONLY discretionary committee under Health and Human Services that the current administration has chosen to eliminate.

SOLVE ME/CFS Initiative encourages our community members to make their voices heard at this meeting.

Below is the agenda for the September 13 open session:

10:00 a.m.

III. Call to Order and Opening Remarks

Dr. Walter Koroshetz, Chairperson, Director, NINDS

10:05 a.m.

IV. Report of the Director, Division of Extramural Activities, NINDS

Dr. Robert Finkelstein, Executive Secretary, NANDS Council

A. Consideration of Minutes of May 24, 2018, Meeting

B. Confirmation of Dates for Future Council Meetings

Thurs. & Fri., February 14-15, 2019

Thurs. & Fri., May 23-24, 2019

Wed. & Thurs. September 4-5, 2019

Wed. & Thurs. February 5-6, 2020

Wed. & Thurs. May 27-28, 2020

Wed. & Thurs. September 9-10, 2020

C. Other Items

Expedited Review Process

Extramural Announcements

10:15 a.m.

V. Report of the Director, NINDS

Dr. Walter Koroshetz

11:15 a.m.

VI. NINDS Principal Investigator Age Distribution and Age at First R01-Grant

Dr. Christine Torborg, NINDS Office of Science Policy and Planning

12:15 p.m.

LUNCH

1:15 p.m.

VII. Division of Translational Research (DTR) – An Introduction

Dr. Amir Tamiz, Office of Translational Research

2:45 p.m.

BREAK

3:00 p.m.

VIII. Initiatives Requiring Concept Clearance:

– Unbiased Data Independent Acquisition (DIA) Proteomics for AMP PD

Dr. Marg Sutherland, Neurodegeneration Cluster

– AMP PD Data Analysis

Dr. Marg Sutherland

– Optimization of Non-addictive Therapies [Small Molecules and Biologics] to Treat Pain

Dr. Chuck Cywin, Division of Translational Research

– Translating BRAIN/SPARC/HEAL Discoveries into Effective Stimulation Devices for Pain Treatment

Dr. Nick Langhals, Repair and Plasticity Cluster

– Pain Effectiveness Research Trial Initiative

Dr. Jeremy Brown, Division of Clinical Research

3:30 p.m. **

ADJOURNMENT

**This time is tentative

What is the Advisory Council?

Each Institute of the National Institutes of Health maintains a national advisory council which has two general functions: (1) to advise the Institute on policy and procedures affecting the extramural research programs and (2) to provide a second level of review for all grant and cooperative agreement applications considered by the Institute for funding. Except for fellowships, the NINDS may not award a grant unless it has been recommended for support by the National Advisory Neurological Disorders and Stroke (NANDS) Council.

The NANDS Council meets regularly three times a year: in early February, late May, and mid-September. A portion of this meeting is open to the public and the remainder is a closed confidential session devoted primarily to the review of applications.

In addition to application review, the NINDS Director utilizes the expertise and experience of NANDS Council members for activities such as the following: