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 was hosted in-person at the Neuroscience Center Building located at 6001 Executive Boulevard, Rockville, MD 20852, and virtually via Zoom Webinar.
Thank you to the 2024 NINDS Nonprofit Forum Executive Committee for their time and dedication in developing this year’s program content.
This year, the NINDS Nonprofit Forum offered informal opportunities to meet with NINDS program staff to learn more about NINDS efforts in your areas of interest.
NINDS program staff was available in-person at the Neuroscience Center Building on both mornings of the forum from 9 a.m. to 10 a.m. on July 23rd and July 24th for a meet and greet and to ask questions related to participants' areas of interest.
Keynote Speaker, Mindy Uhrlaub
Mindy Uhrlaub is a founding member of End the Legacy, a nonprofit dedicated to the needs of genetic ALS/FTD patients. She is a Peer Mentor for pre-symptomatic C9orf72 patients at I Am ALS.
Agenda
Empowering Patient Populations
| Time (ET) | Event |
|---|---|
| 9:00 a.m. | Meet and Greet with NINDS Program Directors and Staff |
| 10:00 a.m. | Welcome Dr. Walter Koroshetz, Director, NINDS |
| 10:15 a.m. | Keynote Speaker: Mindy Uhrlaub, Worrier to Warrior: How Community Engagement Gets Me Closer to a Cure |
| 11:00 a.m. | Panel Session and Discussion: Increasing Patient Participation and Engagement in Rural Areas and Minoritized Populations Moderator: Richard Benson, NINDS |
| 12:30 p.m. | Lunch (On Your Own) and Networking |
| 1:30 p.m. | Panel Session and Discussion: Engaging Participants as Partners in Research: Data and Its Use Moderator: Adam Berger, National Institutes of Health, Office of Science Policy |
| 2:45 p.m. | Panel Session and Discussion: Artificial Intelligence: Opportunities and Challenges for Nonprofit Organizations and Patients Moderator: Katie Sale, American Brain Coalition |
| 4:00 p.m. | Poster Session and Networking |
| Time (ET) | Event |
|---|---|
| 9:00 a.m. | Poster Session and Networking |
| 10:00 a.m. | Welcome and Recap Day 1: Amy Bany Adams, NINDS |
| 10:15 a.m. | Panel Session and Discussion: Engaging Patients throughout the Clinical Trial and Drug Development Process Moderator: Louise Vetter, Huntington’s Disease Association of America |
| 11:30 a.m. | Success Stories: Co-Learning Amongst Nonprofits: Nonprofit Ambassador Programs Moderator: Jen French, Neurotech Network |
| 12:45 p.m. | Forum Wrap Up |
| 1:00 p.m. | Lunch (On Your Own) |