KIF1A.ORG has an active and relentless Board of Directors. Our Board drives strategy and propels the mission of the organization. With diverse skillsets and decades of experience, these leaders and disruptors don’t just think outside the box, they get rid of the box entirely. The KIF1A.ORG Board makes sure every shot on goal is science-driven, community focused and powered to rapidly discover and develop treatment for KIF1A Associated Neurological Disorder.
KIF1A.ORG Co-Founder & Board Chair
Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. Luke has extensive experience in rare disease advocacy, research initiatives and stakeholder engagement. His mission is to accelerate biotech innovation and forge efficient collaborations within the scientific and patient communities, resulting in discovery of treatment for children like Susannah.
With a focus on research strategy and meaningful outcome measures, Luke relentlessly works to educate and activate families affected by rare genetic diseases. By making sure every KIF1A family plays an active role in discovery, from pre-clinical research through clinical trial readiness and beyond, Luke helps drive our mission to find therapeutic options for children living with KIF1A Associated Neurological Disorder.
Sally Jackson is the co-founder of KIF1A.ORG and mother to KAND superstar Susannah. Sally and her husband, Luke Rosen, live in New York City with Susannah, their equally awesome son, Nat, and Pippin, Susannah’s service poodle extraordinaire. Sally has another life behind her, but this is the one that matters now.
VP, Business Development & Alliance Management, Ovid Therapeutics
Hans is a dedicated leader, innovator and advocate in the rare disease community with over 25 years of experience in the biopharmaceutical industry. At Ovid, Hans establishes and manages global strategic partnerships to rapidly bring potential therapeutics to patients and families affected by rare, neurological disorders, such as Ovid’s relationships with Takeda and Lundbeck.
Hans is driven by hope and passion to increase awareness and advance a scientific understanding for members of the rare disease community. Hans plays a critical role in bringing together multiple stakeholders to efficiently address the unmet therapeutic needs within rare and neglected disease communities.
Hans has led and executed numerous transactions for Ovid, Ophthotech, Abbott, Roche and Vertex. Having been based both in the US and abroad, he established and led teams to enable global, regional and local transactions across more than 30 countries in emerging and developed markets.
Hans is an active board member and advisor to KIF1A.ORG, NYBIO and several early-stage biotechnology companies.
Hans began his career as a bench scientist at Genentech where he authored 15 structural biology related peer-reviewed papers. He earned a Master of Business Administration from Babson College, a Master of Science in Chemistry from San Francisco State University and a Bachelor of Science in Biochemistry from the University of Vermont.
Founder, Global Genes
Nicole founded Global Genes in September 2008 catalyzed by a friend whose son was born with a rare genetic condition called Jouberts Syndrome. Their journey to a diagnosis is what inspired Nicole to create Global Genes and become a committed champion for rare disease patients and their families.
Nicole successfully launched and built Global Genes into a multi-million dollar non-profit organization, fulfilling the vision and mission of creating a connected, empowered and inspired global rare disease community. Since its inception, Global Genes has impacted hundreds of thousands of patients worldwide, works with over 600 rare disease patient advocacy organizations, has 100+ biopharma partners and has worked directly with advocates in over 25 countries. Global Genes has become an important hub and connecting point for the entire rare disease ecosystem.
In addition to her role at Global Genes, Nicole has co-founded RARE-X, a new non-profit, that is set to become the largest collaborative patient-researcher data engagement and data harmonization platform the world over. Her intentions are to remove barriers to access to testing, provide patients a best-in-class, open, patient-owned registry platform that communicates with a data sharing and harmonization platform, connecting disparate data-sets regardless of where they reside. The intention is to accelerate disease understanding, diagnosis, and future cures. This will be world changing.
In her early career, Nicole held numerous consulting, sales, and marketing executive roles in her 30 years in business. Nicole has worked with world-class organizations in media, pharmaceuticals, venture and the high-tech sector. Nicole is a proven leader, passionate creator, collaborator and entrepreneur.
Nicole serves as a member of ICORD, a founding board member of the Alliance for Regenerative Medicine Foundation for Cell and Gene Medicine, and serves in an advisory capacity for several biotech and patient advocacy organizations.
Nicole holds her BS in Political Science from the University of California San Diego. She is a proud wife and mother of two college age children, and in her spare time enjoys yoga, beach volleyball, her Peloton, annual family trips to Cabo San Lucas and watching women’s college soccer.
American Chef, Restaurateur
Bobby Flay is one of America’s most celebrated chefs and restaurateurs, cookbook authors, and media personalities. He is the creator of critically acclaimed restaurants around the country, including Mesa Grill Las Vegas, Gato, 13 locations of Bobby’s Burger Palace nationwide, and his latest venture, Shark at The Palms in Las Vegas. Flay is the author of 15 cookbooks and has starred in countless Food Network programs. His many distinctions include the 1993 James Beard Award for Rising Star Chef of the Year, his induction into the James Beard Foundation’s Who’s Who of Food and Beverage in America in 2007, and five Daytime Emmy Awards for “Boy Meets Grill,” “Grill It! with Bobby Flay,” and “Barbecue Addiction.” In 2015, he became the first chef to be awarded a star on the Hollywood Walk of Fame. Mr. Flay lives in New York City with his two Maine Coon cats, Nacho and Stella, and has a 20-something daughter named Sophie who lives and works in Los Angeles.