THE NINDS NONPROFIT FORUM


The National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to an annual Nonprofit Forum. The Progress through Partnership Forum provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff.

Agenda

Wednesday, July 7th

11:30-11:45 a.m. ET
(8:30-8:45 a.m. PT)

NINDS Director’s Welcome
Dr. Walter Koroshetz

11:45 a.m.-12:30 p.m. ET
(8:45-9:30 a.m. PT)

Keynote (30-min. presentation; 15-min. Q & A)
Susan Schneider Williams

12:30-1:30 p.m. ET
(9:30-10:30 a.m. PT)

Clinical Solutions Following COVID: New Opportunities in New Times (45-min. presentation; 15-min. Q & A)
Co-Moderators: Paul Gross and Geraldine Bliss

Speakers:  Liz Barry Kravis (Rush Memorial), Ray Dorsey (Univ. of Rochester), Laura Lee Johnson (FDA), Anne Pariser (ORDR)

1:30-2:00 p.m. ET
(10:30-11:00 a.m. PT)

BREAK (Free-form Networking for Participants; 1:1 chats with NINDS Staff)

2:00-2:45 p.m. ET
(11:00-11:45 a.m. PT)

Meet the Program Directors (breakout session)

2:45-3:00p.m. ET
(11:45 a.m.-12:00 p.m. PT)

Wrap Up

 

Thursday, July 8th

11:30 a.m.-12:30 p.m. ET
(8:30-9:30 a.m. PT)

Patient Engagement: Co-Producing Clinical Success
Co-Moderators: Nina Schor and Richard Benson

Speakers:  Rebecca Baker (HEAL Initiative), Robyn Bent (FDA), Roger Lamoureux (Adelphi Values), Mary Anne Meskis (Dravet Syndrome Foundation)

12:30 p.m.-12:40 p.m. ET
(9:30-9:40 a.m. PT)

BREAK

12:40-1:40 p.m. ET
(9:40-10:40 a.m. PT)

Nonprofit Tools and Resources of Note
Co-Moderators: Ron Bartek and Monica Weldon

Speakers:  Jeff Barrett (C-PATH), David Cella (PROMIS), Samantha White (NINDS)

1:40-1:45 p.m. ET
(10:40-10:45 a.m. PT)

BREAK

1:45-2:45 p.m. ET
(10:45-11:45 a.m. PT)

Success Stories: Importance of Early Diagnoses
Moderator:  Janet L. Hieshetter (DMRF)

Speakers: Allyson Berent (FAST), Nathalie Maitre (Nationwide Children’s Hospital), Dominique Pichard (Rett Syndrome)

2:45-3:00 p.m. ET
(11:45 a.m.-12:00 p.m. PT)

Wrap Up