THE NINDS NONPROFIT FORUM
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.
IN-PERSON ATTENDEES: PRE-ORDER LUNCH OR BRING YOUR OWN
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.
Keynote
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.
Agenda
Monday, July 24th
| 9:00 a.m. ET | 1:1 Meet with NINDS Program Staff |
| 10:00 a.m. ET | Welcome |
| 10:15 a.m. ET | Keynote |
| 11:00 a.m. ET | Gene Therapy: Partnerships and Collaborations |
| 12:00 p.m. ET | Lunch (On Your Own) and Networking |
| 1:00 p.m. ET | Gene Therapy: Ethics in Cell Therapies and Dilemmas Researchers Face |
| 2:00 p.m. ET | Nonprofits Funding Non-Profit Research |
| 3:00 p.m. ET | Success Stories: Newly Approved Drugs: The Stages of Approval |
| 4:00 p.m. ET | State of the Institute, Q&A with NINDS Division Directors and Program Staff |
| 5:00 p.m. ET | Poster Session and Networking |
Tuesday, July 25th
| 9:00 a.m. ET | 1:1 Meet with NINDS Program Staff |
| 10:00 a.m. ET | Welcome and Recap Day 1 |
| 10:15 a.m. ET | Patient Data |
| 11:15 a.m. ET | Specialty Session: Community Engagement Strategies to Boost Diversity Enrollment in Clinical Trials from a Pharma Industry Perspective |
| 12:15 p.m. ET | Forum Wrap Up |
| 12:30 p.m. ET | Lunch (On your Own) and Networking |
| 2:00 p.m. ET | 1:1 Zoom Meet with NINDS Program Staff (FOR VIRTUAL ATTENDEES ONLY) |
* 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.