2020 NINDS Nonprofit Forum

June 29, 2020 - June 30, 2020

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The National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to an annual Nonprofit Forum. The Progress through Partnership Forum provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff.

An associated free webinar on the importance of narrative in the nonprofit and research space was held on Thursday, July 16th from 3:00 p.m. - 4:00 p.m. ET.

The 2020 Forum included a session on June 29th, COVID Challenges in Nonprofit and Research Communities. The session moderators wanted to ensure the session was both relevant and effective for the community. The moderators tailored the session based on preliminary responses to an evaluation survey, and we welcomed interested parties to continue to provide their input.

Agenda

Watch Videocast: Day 1

Day 1: June 29, 2020
TimeAgenda Item
10:30 a.m. - 10:45 a.m.NINDS Director’s Welcome
10:45 a.m. - 11:30 a.m.Keynote: How Cure SMA has Made Progress by Building Community and Collaborations
11:30 a.m.- 12:15 p.m.COVID Challenges in Nonprofit and Research Communities
12:15 p.m. - 12:45 p.m.Break
12:45 p.m. - 1:45 p.m.Challenges in Therapeutic Development
1:45 p.m. - 2:45 p.m.Meet the Program Directors Part : Breakouts by Division of Neuroscience with Divisions of Translational and Clinical Research participation
2:45 p.m. - 3:00 p.m.Break
3:00 p.m. - 4:00 p.m.Clinical Trials: Precision Approaches to Rare and Not So Rare Disorders


Watch Videocast: Day 2

Day 2: June 30, 2020
TimeAgenda Item
10:30 a.m. - 11:00 a.m.2021-2026 NINDS Strategic Plan
11:00 a.m. - 12:00 p.m.Meet the Program Directors Part 2: Breakouts by Divisions of Translational Research and Clinical Research with Division of Neuroscience participation

 

Committee Members

2020 Nonprofit Forum Executive Committee Members
MemberOrganization
Adam HartmanNINDS
Amy AdamsNINDS
Chris BoshoffNINDS
Cynthia OviattAtaxia-Telangiectasia Children’s Project
Geraldine BlissCureSHANK
Janet HieshetterDystonia Medical Research Foundation
Jill MorrisNINDS
Lyn JakemanNINDS
Margo WarrenNINDS
Michael OshinskyNINDS
Monica WeldonBridge the Gap – SYNGAP Education and Research Foundation
Nina SchorNINDS
Paul GrossHydrocephalus Association
Ronald BartekThe Friedreich’s Ataxia Research Alliance
Susan DickinsonThe Association for Frontotemporal Degeneration
Walter KoroshetzNINDS

 

Related Resources

Speaker List(pdf, 200 KB)

2020 Nonprofit Forum Evaluation Survey

Related Topics and Tools
The NCATS Toolkit
A resource to provide patient groups with tools to advance medical research.
RaDaR - Rare Diseases Registry Program.
 
NIH 101
A videocast of the NINDS Nonprofit Forum, including an orientation session for new attendees (first session).
 
Grants Process Overview
NIH central resource for grants and funding information.
 
Stories about Science: Narratives for Nonprofits
Webinar on the importance of narrative in the nonprofit and research space.
 

Contact

Contact NINDS_nonprofit_forum@nih.gov with questions and discussion ideas.