KAND Conference 2021 Logo

2021 KAND Family and Scientific Engagement Conference

KIF1A.ORG hosted the 2021 KAND Family & Scientific Engagement Conference on July 9 and 10 to share the latest advancements in research and therapeutic development. KAND patients, family members, researchers, clinicians and advocates came together at this virtual conference as one community united by our mission to improve the lives of those affected by KIF1A-Associated Neurological Disorder (KAND) and accelerate research to find a cure.

Thank you to each and every member of our community for powering our progress and making this conference possible. Whether you want to re-watch a session for the 6th or 7th time, or you weren’t able to join the live conference, below you will find the full conference agenda, session recordings and presentation slides. You can also find these presentations on our YouTube Playlist.

2021 KAND Conference Agenda

Day One: Friday, July 9th

Luke Rosen
Luke Rosen, Co-Founder & Board Chair – KIF1A.ORG

Anouk Lanouette 
Turgeon, Lhassa’s mom – KIF1A.ORG Advocate 

Headshot of Dr. Dominique Lessard
Dominique Lessard, PhD, Chief Science Officer – KIF1A.ORG
Hans-Headshot
Hans Christinger, MBA Board Member – KIF1A.ORG
Kathryn Atchley, President – KIF1A.ORG

Wendy Chung, MD, PhD, Chief of Clinical Genetics Division in Pediatrics & Principal Investigator – Columbia University Irving Medical Center
Lia Boyle, PhD, Researcher – Columbia University Irving Medical Center
Presentation Slides

During this session, patients and family members met privately in small groups to discuss hopes, fears and what matters most to KAND families.

Discussion Guide

Michael Silverman, PhD, Principal Investigator, Silverman Lab – Simon Fraser University
Troy Collins, PhD Student & Lab Member, Silverman Lab – Simon Fraser University
Presentation Slides

Chitnis Headshot
Ajay Chitnis, MBBS, PhD, Senior Investigator & Head of Section on Neural Developmental Dynamics – National Institutes of Health, Division of Intramural Research
Presentation Slides

Jayne Aiken, PhD, Postdoctoral Scientist, Holzbaur Lab – Perelman School of Medicine, University of Pennsylvania
Presentation Slides

Douglas Chapnick, PhD, CEO & Founder – BioLoomics
Presentation Slides

Day Two: Saturday, July 10th

Wendy Chung, MD, PhD, Chief of Clinical Genetics Division in Pediatrics & Principal Investigator – Columbia University Irving Medical Center
Shannon Scott, DNP, Chief Patient Officer – KIF1A.ORG

Wendy Chung, MD, PhD, Chief of Clinical Genetics Division in Pediatrics & Principal Investigator – Columbia University Irving Medical Center
Lia Boyle, PhD, Researcher, Chung Lab – Columbia University Irving Medical Center
Jennifer Bain, MD, PhD, Assistant Professor of Neurology – Columbia University Irving Medical Center

Luke Rosen
Luke Rosen, Co-Founder & Board Chair – KIF1A.ORG
Andrew Parry, Director, Marketing and Communications – Good Dogg Beverage

Omid Karkouti, MS, Co-Founder & COO – Rarebase
Presentation Slides
Rarebase Update Presentation
Rarebase Update Q&A

Amit Rakhit, MD, MBA, President & Chief Medical Officer – Ovid Therapeutics
Sarmiere headshot
Patrick Sarmiere, PhD, Senior Director, Molecular Pharmacology – Ovid Therapeutics

Presentation Slides
Ovid Therapeutics Update
Ovid Therapeutics Update Q&A

Douglas Chapnick, PhD, CEO & Founder – BioLoomics
Presentation Slides
BioLoomics Update Presentation
BioLoomics Update Q&A

Simran Kaur, PhD, Research Officer & Research Fellow – Murdoch Children’s Research Institute
John Christodoulou, PhD, Director, Genetics Theme – Murdoch Children’s Research
Institute
Presentation Slides
MCRI Update Presentation

MCRI Update Q&A

Thank you to our sponsors for supporting our mission at KIF1A.ORG!