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.

This year’s Forum will be hosted in-person at the Natcher Conference Center (Building 45) on the main campus of the NIH in Bethesda, MD and virtually via ZoomGov. 


This year’s keynote speaker, Terry Pirovolakis, will share his experiences and why he wants to change the way rare diseases are approached at the national level.   He is a rare disease crusader and the father of Michael, who has spastic paraplegia type 50 (SPG50), a slow progressing neurodegenerative disorder.   Shortly after Michael’s diagnosis, Terry began researching, reading scientific journals and meeting with gene therapy experts. Mr. Pirovolakis’ fight to find a cure for his son could transform the way rare diseases are treated.


Monday, July 24th

10:00 a.m. ETWelcome
10:15 a.m. ETKeynote
11:00 a.m. ETPanel 1 and Discussion
12:00 p.m. ETLunch (On Your Own*), Networking and 1:1 chats with NINDS Staff
1:00 p.m. ETPanel 2 and Discussion
2:00 p.m. ETPanel 3:  Nonprofit Funding for Nonprofit Research
3:00 p.m. ETSuccess Stories
4:00 p.m. ETTopics for Talks with NINDS Staff
5:00 p.m. ETPosters/Networking

Tuesday, July 25th

10:00 a.m. ETPanel 3 and Discussion
11:00 a.m. ETSpecialty Session Topic
12:15 a.m. ETForum Wrap-Up
12:30 p.m. ETLunch (On Your Own*), Networking and 1:1 chats with NINDS Staff
1:30 p.m. ETAdjourn

* Lunch Options during the Forum: Federal Government regulations prohibit meals from being provided at the 2023 NINDS Nonprofit Forum. In-person attendees should anticipate securing their food and beverages while on site. Please check back as more information on lunch options becomes available.

Join the Discussion

Meet 1:1 with NINDS Staff

Do you have a targeted question for a member of the NINDS Extramural Program Team or staff within the Office of the Director? You will have the opportunity to schedule a 1:1 meeting with NINDS Program Staff. Please check back in late-June for the sign-up link.

Topics of Interest?

The Nonprofit Forum’s overarching goal is “Progress Through Partnership.”  Please let us know if you have ideas for session topics for future NINDS Nonprofit Forums here.

Past Forum Recordings