Progress through Partnership: The 2020 NINDS Nonprofit Virtual Forum

Conferences, workshops, and other gatherings are valuable opportunities for NINDS to connect with the neuroscience community and learn from the constituencies that we serve. After each exchange we become a better Institute. It has been a challenge to enable this critical function during the coronavirus pandemic, but there have been some real successes. On 29th and 30th, we hosted the 14th annual NINDS Nonprofit Forum. This yearly event brings together representatives from nonprofit organizations and professional societies focused on diseases and research topics within the NINDS mission. For the first time, instead of welcoming nonprofit leaders and expert speakers to Bethesda, participants attended an interactive, virtual event. Despite the challenges of COVID-19, the 2020 Executive Planning Committee successfully organized speakers and sessions covering diverse topics, opinions, and expertise. The silver lining to the virtual conference is that it enabled more people to attend than ever before. More than 200 participants from over 130 nonprofit organizations joined the online meeting to connect and learn more about NINDS, NIH, and each other.

The Forum addresses the importance of relationships between public, private, and nonprofit stakeholders to patient-centered research for neurological disorders. This year, the agenda reflected the theme “Collaboration and Capacity Building,” and included keynote and panel presentations relevant to the nonprofit and research communities. Attendees also had ample opportunities to engage with one another by asking questions and joining the discussion. In-depth conversations flowed between nonprofit groups and NINDS program directors during scheduled breakout sessions.

Nonprofit organizations across the country have experienced the effects of COVID-19, as they have been increasingly pressured to adapt to limited funding and interruptions to the research pipeline. Executive Planning Committee members were acutely aware of the hardships the ongoing pandemic presented for nonprofit organizations. Two committee members, Geraldine Bliss, President and Co-Founder of CureSHANK, and Paul Gross, Chairman and Founder of the Cerebral Palsy Research Network, led a special session called “COVID Challenges in Nonprofit and Research Communities.” They presented results from a survey they circulated to the nonprofit community prior to the Forum, which explored the impact of COVID-19 on research, patient support, and finances. The session summarized shared experiences and concluded with strategies employed both by NINDS and nonprofit groups to tackle challenges. This year’s keynote address featured a success story in therapeutic development. Dr. Jill Jarecki, Chief Scientific Officer of CureSMA, delivered a dynamic presentation “How CureSMA Has Made Progress by Building Community and Collaborations.” She shared the remarkable scientific progress made in developing a therapy for spinal muscular atrophy, a success that also relied on a partnership with NINDS. In addition, the meeting included two panel discussions on innovative therapy development and methods for targeted clinical trials for myriad diseases. The sessions titled “Challenges in Therapeutic Development” addressed the key questions about how therapies can be taken through the process that eventuates in a definitive clinical trial. Panelists described the resources of industry, the Office of Rare Disease Research at the NIH National Center for Translational Sciences (NCATS), and the Rare Disease Cures Accelerator of the Critical Path Institute. A second panel entitled “Clinical Trials: Precision Approaches to Rare and Not So Rare Disorders” laid out the promise of drug and genomic therapy for rare neurogenetic disorders and included experts who are exploring building registries, developing natural history studies, sharing data, and engaging industry and pharmaceutical companies. Dr. Peter Marks, the Director of the FDA’s Center for Biologics Evaluation and Research (CBER), stressed that the increasing shift from personalized to individualized product development requires the leveraging of preclinical and manufacturing data across applications, as well as a continuous reassessment of clinical data models.

Seizing the opportunity to hear from stakeholders with different backgrounds and interests, Dr. Nina Schor, NINDS Deputy Director, gave an update on NINDS Strategic Planning. Dr. Schor is leading the development of a new strategic plan for NINDS focused on goals for research, research training and diversity, communication, and workforce culture. She requested feedback from nonprofit leaders and other Forum attendees noting that NINDS also views the strategic planning process as a chance to work through operational issues or challenges. Dr. Schor emphasized that input from the diverse nonprofit community will strengthen NINDS planning.

After the Forum, a follow-on session demonstrated the power of storytelling in patient-centered research. The virtual session featured a presentation by Liz Neeley, Executive Director of The Story Collider, a nonprofit organization devoted to telling true, personal stories about science. This was followed by a talk by Dr. Sonia Vallabh, an Associate Scientist at the Broad Institute, sharing her story of how a genetic prion disease diagnosis in her family inspired her to switch careers from practicing law to becoming a biomedical research scientist. Neeley encouraged nonprofit representatives to add stories to their strategic communications and advocacy toolkits. She explained that stories humanize science and help others understand and relate to a lived experience.

The NINDS Nonprofit Forum always showcases the power of partnerships and collaboration, and I was reminded of that more than ever this year. Although we could not meet in person, everyone who attended the Forum strives for greater understanding of the brain and nervous system and for new and better treatments for neurological disorders. Whether from academic, government, industry, or nonprofit backgrounds, we can all make a difference together.

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Form Approved OMB# 0925-0648 Exp. Date 06/2024