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 NIH Videocast. 


Food and beverage will not be provided by NINDS and there is no onsite cafeteria or food outlet within easy walking distance of the Natcher Convention Center. The deadline to pre-order from Fresh Forks has passed; therefore, we strongly urge you to bring your own food. You will NOT be able to order on-site.


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

9:00 a.m. ET1:1 Meet with NINDS Program Staff
10:00 a.m. ETWelcome
10:15 a.m. ETKeynote
11:00 a.m. ETGene Therapy: Partnerships and Collaborations
12:00 p.m. ETLunch (On Your Own) and Networking
1:00 p.m. ETGene Therapy:  Ethics in Cell Therapies and Dilemmas Researchers Face
2:00 p.m. ETNonprofits Funding Non-Profit Research
3:00 p.m. ETSuccess Stories: Newly Approved Drugs: The Stages of Approval
4:00 p.m. ETState of the Institute, Q&A with NINDS Division Directors and Program Staff
5:00 p.m. ETPoster Session and Networking

Tuesday, July 25th

9:00 a.m. ET1:1 Meet with NINDS Program Staff
10:00 a.m. ETWelcome and Recap Day 1
10:15 a.m. ETPatient Data
11:15 a.m. ETSpecialty Session:  Community Engagement Strategies to Boost Diversity Enrollment in Clinical Trials from a Pharma Industry Perspective
12:15 p.m. ETForum Wrap Up
12:30 p.m. ETLunch (On your Own) and Networking
2:00 p.m. ET1:1 Zoom Meet with NINDS Program Staff

* 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.

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 visit the Join the Discussion page for the sign-up links.
The deadline to register for 1:1 with staff is July 20th at 5:00 PM EST.

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