AGENDA
Day 1 | Tuesday, July 23, 2024
9:00 a.m. ET
Meet NINDS Program Directors and Staff
10:00 a.m. ET
Welcome
Dr. Walter Koroshetz, Director, NINDS
10:15 a.m. ET
Keynote: From Worrier to Warrior: How Community Engagement Gets Me Closer to a Cure
Mindy Uhrlaub, End the Legacy
Mindy Uhrlaub, End the Legacy
11:00 a.m. ET
Panel Presentation and Discussion: Increasing Patient Participation and Engagement in Rural and Minoritized Populations
Moderator: Richard Benson, Office of Global Health and Health Disparities, NINDS
- Suma Babu, ALS Investigator, Mass General Hospital
- Astrid Suchy Dicey, Huntington Medical Research Institutes (HMRI)
- Rakale Quarells, Morehouse School of Medicine
12:15 p.m. ET
Lunch (On Your Own)* and Networking
1:30 p.m. ET
Panel Presentation and Discussion: Engaging Participants as Partners in Research: Data and Its Use
Moderator: Adam Berger, NIH
- Amir Bahmani, Stanford University
- Kyle Brothers, University of Illinois School of Medicine
- Karriem Watson, All of Us
- Shilpa Venkatachalam , Creaky Joints/Global Healthy Living Foundation
2:45 p.m. ET
Panel Session and Discussion: Artificial Intelligence: Opportunities and Challenges for Nonprofit Organizations and Patients
Moderator: Katie Sale, American Brain Coalition
- Ishita Das, Milken Institute
- Maya Rockeymore Cummings, The Light Collective
- Laura L. Adams, National Academy of Medicine
- John Wilbanks, Broad Institute of MIT and Harvard
4:00 p.m. ET
Poster Session and Networking
Day 2 | Wednesday, July 24, 2024
9:00 a.m. ET
Poster Session and Networking
10:00 a.m. ET
Welcome and Recap Day 1
Amy Bany Adams, Acting Deputy Director, NINDS
10:15 a.m. ET
Panel Presentation and Discussion: Engaging Patients throughout the Clinical Trial and Drug Development Process
Moderator: Louise Vetter, Lupus Foundation of America
- Christin Veasly, Cofounder and Director, Chronic Pain Research Alliance
- Michelle Campbell, FDA – Patient-Focused Drug Development
- Heidi Wallis, Association for Creatine Deficiencies
- Edgar Vega, Associate Director, Patient Advocacy, uniQure
11:30 a.m. ET
Success Stories: Co-Learning Amongst Nonprofits: Nonprofit Ambassador Programs
Moderator: Jen French, Neurotech Network
- Meri-Margaret Deoudes, Parkinson’s Foundation
- Ian Burkhart, NASCIC: North American Spinal Cord Injury Consortium
- Lauren Massimo, University of Pennsylvania Frontotemporal Degeneration Center
12:45 p.m. ET
Forum Wrap Up
1:00 p.m. ET
Lunch (On Your Own)
* Lunch Options during the Forum: Federal Government regulations prohibit meals from being provided at the 2024 NINDS Nonprofit Forum. In-person attendees should anticipate securing their food and beverages while on site. Nearby lunch options may be found here.