AGENDA

Day 1 | Monday, July 24, 2023

NIH VideoCast – NINDS Nonprofit Forum (Day 1)

9:00 a.m. ET	1:1 Meet with NINDS Program Staff
10:00 a.m. ET	Welcome Dr. Walter Koroshetz, Director, NINDS
10:15 a.m. ET	Keynote Terry Pirovolakis, Bespoke Gene Therapy
11:00 a.m. ET	Gene Therapy: Partnerships and Collaborations Moderator: Ron Bartek, FARA Speakers: PJ Brooks, NCATS’ Division of Rare Diseases Research Innovation Travis Lewis, Prevail Therapeutics Gopa Raychaudhuri, Center for Biologics Evaluation and Research CBER, FDA Courtney Silverthorn, Research Partnerships at the Foundation for the National Institutes of Health, Bespoke Gene Therapy Consortium
12:00 p.m. ET	*Lunch (On Your Own) and Networking**, including pre-scheduled 1:1 Meet with Program Directors
1:00 p.m. ET	Gene Therapy: Ethics in Cell Therapies and Dilemmas Researchers Face Moderator: Jill Morris, NINDS Speakers: Reghan Foley, M.D., MD(Res) Senior Research Physician, Neuromuscular & Neurogenic Disease of Childhood, Neurogenetics Branch Maria Kefalas, Author, Advocate, Philanthropist Vasiliki Rahimzadeh, Baylor College of Medicine
2:00 p.m. ET	Nonprofits Funding Non-Profit Research Moderator: Penny Dacks, AFTD Speakers: Debra Niehoff, AFTD Manish Raisinghani, Target ALS Foundation Vicky Cattani, Parkinson’s Foundation Paul Gross, Cerebral Palsy Research Network Christine Torborg, Ph.D., NINDS Office of Science Policy & Planning
3:00 p.m. ET	Success Stories: Newly Approved Drugs: The Stages of Approval Moderator: Louise Vetter, HDSA, Invited Speaker Speakers: Ron Bartek, FARA Melissa Kennedy, International Rett Syndrome: Foundation Tim Miller, Washington University School of Medicine Neil Thakur, ALS Association
4:00 p.m. ET	State of the Institute Dr. Walter Koroshetz, Director, NINDS Q&A with NINDS Division Directors and Program Staff
5:00 p.m. ET	Poster Session and Networking

Day 2 | Tuesday, July 25, 2023

NIH VideoCast – NINDS Nonprofit Forum (Day 2)

9:00 a.m. ET	1:1 Meet with NINDS Program Staff
10:00 a.m. ET	Welcome and Recap Day 1 Dr. Amy Bany Adams, Acting Deputy Director, NINDS
10:15 a.m. ET	Patient Data Moderator: Christine Von Raesfeld, People with Empathy Speakers: Aliza Fink, NORD Diane Stephenson, C-Path Parkinson’s Disease Consortium David Voccola, Prometheus Christine Von Raesfeld, People with Empathy
11:15 a.m. ET	Specialty Session: Community Engagement Strategies to Boost Diversity Enrollment in Clinical Trials from a Pharma Industry Perspective Organizer: Richard Benson, NINDS Moderator: Cheryse Sankar, NINDS Speakers: Naomi Booker, NINDS Stephanie J. Monroe, UsAgainstAlzheimer’s Tony Pearson, Eli Lilly and Company Pierre Theodore, Genentech
12:15 p.m. ET	Forum Wrap Up
12:30 p.m. ET	*Lunch (On your Own) and Networking**
2:00 p.m. ET	1:1 Zoom Meet with NINDS Program Staff (FOR VIRTUAL ATTENDEES ONLY)

* Lunch Options during the Forum: Federal Government regulations prohibit meals from being provided at the 2023 NINDS Nonprofit Forum and there is no onsite cafeteria or food outlet within easy walking distance of the Natcher Convention Center. We strongly urge you to bring your own food.