We’re excited to gather the KIF1A.ORG community of patients, families, scientists, clinicians, biotech leaders, and supporters at the 2022 Virtual KAND Family & Scientific Engagement Conference on August 13!

Note: You must register first before entering the virtual conference! Submit the form at the bottom of this page.

At the 2022 KAND Conference, you’ll see the latest in KAND research and therapeutic development, learn about common KAND symptoms and care considerations, interact with members of the community, and hear from the experts: KAND patients and families.

Thank you to our sponsors for making the 2022 Virtual KAND Family & Scientific Engagement Conference possible!


All times are in Eastern Daylight Time, New York City, UTC-04:00

11:00 a.m. – Noon | Pre-Conference Networking & Technical Assistance
Join us early for open networking & technical assistance from our tech team if needed!

Noon – 12:05 p.m. | Welcome & Why We’re Here
Luke Rosen, Board Chair, KIF1A.ORG

12:05 – 12:35 p.m. | We Remember Gia’s Story & Tribute Video
Angela Capello, Gia’s mom
Jeremy Capello, Gia’s dad
Juliana Capello, Gia’s big sister
Joey Capello, Gia’s big brother

12:35 – 12:40 p.m. | Meet Our Superheroes – Volume 1

12:40 – 1:30 p.m. | Columbia University KAND Study Update & Q&A
Wendy Chung, MD, PhD, Chief of Clinical Genetics Division in Pediatrics & Principal Investigator, Columbia University Irving Medical Center (CUIMC)
Questions Moderated by: Shannon Dennis, DNP, Chief Patient Officer, KIF1A.ORG

1:30 – 2:00 p.m. | #ThisIsKIF1A: What You Can’t Learn About in the Literature
Katelynn Coughlin, Norah’s mom
Krystalyn Workman, Bryce’s mom
Charisma Freeman, Cameron’s mom
Bill Mainini & Sabrina Mainini, Bill’s sister
Kat Atchley, President, KIF1A.ORG & Parker’s mom

2:00 – 2:45 p.m. | Social Time: Breakout Tables

2:45 – 3:00 p.m. | Break & Networking

3:00 – 3:40 p.m. | Spasticity & KAND
Jennifer M. Bain, MD, PhD, Pediatric Neurology, CUIMC
Jacqueline Montes, PT, EdD, NCS, Pediatric Neuromuscular Clinical Research Network, CUIMC

3:40 – 3:45 p.m. | KIF1A.ORG Video: Jim’s Story

3:45 – 4:00 p.m. | KIF1A.ORG’s Therapeutic Development Strategy
Dominique Lessard, PhD, Chief Science Officer, KIF1A.ORG

4:00 – 4:30 p.m. | NeuCyte Update & Q&A
Wayne Poon, PhD, Head of Neuroscience, NeuCyte

4:30 – 5:00 p.m. | Christodoulou & Gold Labs Update & Q&A
Simran Kaur, PhD, Research Officer, The University of Melbourne
Wendy Gold, PhD, Senior Research Fellow, The University of Sydney

5:00 – 5:30 p.m. | Ovid Therapeutics Update & Q&A
Noélle D. Germain, PhD, Associate Director, Pre-clinical Development, Ovid Therapeutics
Patrick D. Sarmiere, PhD, Senior Director, Molecular Pharmacology, Ovid Therapeutics

5:30 5:35 p.m. | Meet Our Superheroes – Volume 2

5:35 5:55 p.m. | How You Can Advance KAND Therapeutics
Luke Rosen, Board Chair, KIF1A.ORG

5:55 – 6:00 p.m. | KIF1A.ORG Video Premiere: Care Until Cure

Register for the 2022 KAND Conference!