We invite you to register and join us at the 2024 NINDS Nonprofit Forum on July 23-24 via Zoom or in-person in Rockville, MD. Attracting 150-200 attendees from over 100 organizations, the annual NINDS Nonprofit Forum brings together the neuroscience community, including nonprofit and patient advocacy organizations, professional societies focused on neurological disorders and neuroscience research, people with lived experience of neurological disorders (PWLE), NINDS staff, researchers, academia, and other federal partners, to build connections, learn from one another, and continue to make progress together.
This year’s agenda will interweave the theme of empowering patient populations throughout the 1.5-day forum. Our keynote speaker is Dr. Chelsey Carter, Assistant Professor of Public Health in the Department of Social and Behavioral Sciences at Yale University, who will share her experiences and research on how embodied inequality impacts diagnosis, treatment, and engagement in clinical care and research trials. Dr. Carter’s research program examines how scientific knowledge production, clinical care, and systemic marginalization impact historically underrepresented communities affected by rare and neurodegenerative diseases, like amyotrophic lateral sclerosis (ALS). She is Founder and Director of The LEITH (Lived Experiences Igniting Transformations in Health) Lab – a hub to address “Black invisibility” and misdiagnosis at the intersection of genomic research, ALS, and other rare neurodegenerative diseases, and she is undertaking a book project that draws on over 15 years of experience with Black communities affected by ALS.
Following this year’s keynote, there will be a special panel on “Increasing Patient Participation and Engagement in Rural and Minoritized Populations” moderated by Dr. Richard Benson, Director of the NINDS Office of Global Health and Health Disparities, with panelists from Massachusetts General Hospital, Huntington Medical Research Institutes, and Morehouse School of Medicine. This panel will focus on the unique needs of engaging individuals that are not adequately included in the research process.
Additional panels during this year’s Forum will include:
- “Engaging Participants as Partners in Research: Data and Its Use”, moderated by Dr. Adam Berger, Director of the Division of Clinical and Healthcare Research Policy in the Office of Science Policy at NIH, with panelists from Stanford University, University of Illinois School of Medicine, All of Us, and Creaky Joints/Global Healthy Living Foundation
- “Artificial Intelligence: Opportunities and Challenges for Nonprofit Organizations and Patients”, moderated by Katie Sale, Executive Director of the American Brain Coalition, with panelists from the Milken Institute, The Light Collective, National Academy of Medicine, and the Broad Institute of MIT and Harvard
- “Engaging Patients throughout the Clinical Trial and Drug Development Process”, moderated by Louise Vetter, former President and CEO of the Huntington’s Disease Society of America, with panelists from the Chronic Pain Research Alliance, Food and Drug Administration, Association for Creatine Deficiencies, and uniQure.
At the beginning of the Forum, I will provide a “State of the Institute” talk to highlight the important role of PWLE and nonprofit and patient advocacy organizations in shaping and championing research that provides a greater understanding of the brain and is critical for new and better treatments of neurological disorders. In addition, Dr. Amy Bany Adams, NINDS Acting Deputy Director, will share information on NINDS efforts to engage with and be inclusive of diverse communities, the NIH Patient Care Research Initiative, and the Institute’s upcoming 75th Anniversary.
The Forum provides an opportunity for the nonprofit community to meet with NINDS staff and for nonprofits to connect with each other and share best practices and lessons learned. This year’s agenda will include multiple opportunities to network and foster sharing among attendees, including an informal networking coffee hour, two poster sessions, and a “success stories” panel on advocacy ambassador programs, which help nonprofit organizations and the PWLE population understand more about research and clinical trial processes and in turn be more involved partners. The session will be moderated by Jennifer French, Founder and Executive Director of Neurotech Network, with panelists from the Parkinson’s Foundation, North American Spinal Cord Injury Consortium, and University of Pennsylvania.
The NINDS Nonprofit Forum is one of my favorite meetings of the year, and previous attendees report that “each year is even more valuable than the year before.” As testament to its distinct value, the NINDS Nonprofit Forum was recently recognized by the new NIH Engaging the Public as Partners in Clinical Research (ENGAGE) initiative as an exemplary example for building “sustainable engagement” and an excellent model for building collaboration, trust, and shared understanding among nonprofit leaders, PWLE populations, researchers, and federal partners. NIH ENGAGE aims to develop a vision and framework for incorporating public voices in all phases and types of clinical research, and we are keen on continuing our partnership to support its efforts to increase public engagement in clinical research.
I am grateful to the NINDS Nonprofit Forum Planning Committee, comprised of representatives from the nonprofit community, patient advocacy organizations, PWLE, and NINDS staff, for their skillful planning of this year’s exciting agenda. If you are unable to join us on July 23-24, recordings from the meeting will be available within a few weeks after the conference at the NINDS Nonprofit Forum website. I look forward to your engagement in the 2024 NINDS Nonprofit Forum!