The National Institute of Neurological Disorders and Stroke (NINDS), is charged with stewarding the U.S. biomedical investment for developing the means to prevent and treat neurological disorders. Listening and exploring research strategies with organizations that represent those suffering from neurologic disorders are absolutely essential in carrying out our responsibilities to the American public. Such communications occur throughout the year but the annual Nonprofit Forum is a unique opportunity for NINDS to hear what issues are important to our stakeholders. It also provides a venue for the non-profit disease- and health-focused organizations to convene around lessons learned from their organization’s work to build awareness and advocate for the needs of their communities. Thank you to everyone who joined us on June 25 for the 2025 NINDS Nonprofit Forum. For the first time, the Forum was co-sponsored by NINDS and the American Brain Coalition, an organization made up of the leading professional neurological, psychological, and psychiatric associations and patient organizations in the U.S. This year’s gathering marked the Forum’s 20th anniversary and honored NINDS’s 75 years of advancing discoveries for people living with neurological disorders. More than 500 people attended this year’s Forum in-person and virtually. The day was a compelling reminder of how collaboration in research, advocacy, and education can accomplish our shared purpose to improve the lives of people with brain disorders.
The Forum opened with a keynote address from former U.S. Representative Jennifer Wexton, who shared her personal journey from experiencing the telltale signs of progressive supranuclear palsy (PSP), a rare and degenerative neurological disease, to receiving the life-changing diagnosis, and finding the treatments and adaptive technologies that help her navigate day-to-day life. Speaking with openness, clarity, and courage, Wexton reflected on her journey from diagnosis to public disclosure, highlighting the challenges of navigating a life-changing condition while in public service. Her words underscored the importance of transparency, compassion, and the need for policies that consider the real experiences of patients. “I wanted to use my story to educate people,” she said, reminding us how personal stories can reduce stigma, influence systems, and inspire change. Her keynote set the tone for the day—centering the voices of those most affected by neurological disorders in the pursuit of meaningful progress. Please see her powerful talk beginning at minute 36 on the videocast.
Throughout the day, we heard from experts in public-private partnerships, nonprofit leaders, biotech innovators, and individuals with lived experience who are driving patient-led therapeutic development. The panels and discussions reinforced that when we work together—combining science, policy expertise, personal insight, and patient leadership—we move closer to therapies that are not only effective, but truly responsive to patient needs.
Midday, in-person attendees had the opportunity to meet one on one with NINDS program officers, creating space for direct dialogue, resource-sharing, and future collaboration.
In the "State of the Science" panel, experts discussed the future of neuroscience research and the challenges ahead. Dr. Craig Blackstone emphasized the need to better connect basic science discoveries with clinical applications, noting that “every disease needs a bespoke approach" when it comes to gene therapies. Dr. Ed Kaye, speaking from his experience in academia and industry, highlighted ongoing challenges and opportunities in the development of genomic therapies. Dr. Pooja Khatri spoke to the importance of building clinical trial networks, saying, “Having a clinical trial network in place means you can move faster when something new comes along.” Dr. Evaristus Nwulia discussed the need for intentional efforts to build trust and ensure widespread access to innovation, noting that varied teams ask different questions—and that makes for better science.
A panel on public-private partnerships featured dynamic presentations from leaders who are advancing shared goals through collaboration. Sheena Posey Norris of the National Academies of Sciences, Engineering and Medicine stressed the importance of strategic convening to identify common ground, while Dr. Courtney Silverthorn from the Foundation for the National Institutes of Health outlined how it accelerates science through pre-competitive collaborations. Joe Vandigo of Applied Patient Experience brought a patient-centered lens to the discussion, emphasizing the need for frameworks that genuinely integrate community input. Rachel Wurzman of the American Brain Coalition shared insights on how coalitions can bridge policy and science to advance treatments more efficiently.
The day closed with a intriguing session on storytelling and its place in achieving strategic goals, reinforcing that narratives are powerful means to convey important messages. Jennifer Grossman Sills of the CSNK2A1 Foundation and Gardiner Lapham of the BAND Foundation spoke about the transformative role storytelling plays in building partnerships, raising awareness, and creating tangible change. Moderator Sunitha Malepati of the CACNA1A Foundation emphasized that stories are among the most strategic tools in driving progress.
I am grateful to the NINDS Nonprofit Forum Planning Committee, the American Brain Coalition, and all our speakers, moderators, and attendees for making this year’s event so enriching, insightful, and meaningful. Particular thanks to the American Brain Coalition’s Katie Sale and Jennifer French, whose leadership was key to the Forum’s success. If you missed the Forum or would like to revisit the discussions, I invite you to watch the full recording here:
Watch the 2025 NINDS Nonprofit Forum
Together, researchers, people living with neurological disorders, caregivers, providers, and advocates are strengthening neuroscience research, driving treatment innovations, and building awareness and compassion—and we at NINDS look forward to continuing this journey with you.