Join us for an insightful evening exploring Familial Dysautonomia (FD), a rare genetic condition that affects the nervous system.
We’ll hear from Dr Frances Lefcort, a leading FD researcher who has spent decades studying the condition and developing potential gene therapy approaches, alongside Rosalind Jacobs, who will share a personal perspective as the parent of a daughter with FD and her experience supporting the FD community.
Together, they’ll offer a unique look at FD from both a scientific and lived-experience perspective.
Meet the speakers
Dr Frances Lefcort
Frances Lefcort currently co-directs the Scientific Advisory Board for the Familial Dysautonomia (FD) Foundation and is the Chief Scientific Officer for the public benefit company the Foundation formed, Tikun Therapeutics. She has a Ph.D in Neuroscience from University of California, Berkeley and did a post-doctoral fellowship at UCSF.
From 1994-2024, Dr. Lefcort was a professor and department head at Montana State University, where her lab studied the cellular and molecular mechanisms causing FD, and developed a potential therapeutic for FD, a gene therapy vector.
Rosalind Jacobs
Rosalind Jacobs is Chair of Familial Dysautonomia UK and a passionate advocate for people living with rare conditions. Her daughter Natasha’s diagnosis with Familial Dysautonomia led Rosalind to develop a strong interest in medical care and rare diseases, changing the direction of her career from beauty to patient advocacy.
She served as a Carer Governor at UCLH for nine years and has been a Patient and Public Voice (PPV) representative for Rare Diseases at NHS England. She continues to sit on NHS England’s Neuro-Spinal group and works to ensure the experiences and voices of patients and families help shape healthcare and support for those living with rare conditions.
