BDSRA Virtual Annual Family Conference

July 23 - 25, 2021 | virtual

Hosted by Batten Disease Support and Research Association

Jennifer Briggs Braswell, PhD, Executive Director of Foundation for Cell & Gene Medicine, will host a panel about Understanding Clinical Trials. The panel explores clinical trials for Battens Disease and other CLN disorders with Erika Augustine, MD, Associate Chief Science Officer and Director of Clinical Trials at Kennedy Kreiger Institute, and Joe & Michelle O'Leary, parents of a boy who participated in a trial for the only approved drug for CLN2. They also discuss the special nature of Gene therapy trials for Battens and related genetic disorders.

The BDSRA’s signature event each year is the family conference. In 2019, over 450 family members, children, and researchers attended to learn about patient care, education, and the latest research. In 2020, due to the COVID-19 pandemic, They held the family conference virtually for the first time ever! Approximately 700 people from over 15 different countries attended sessions virtually. Each member of the family and industry experts were able to engage in a meaningful way from the comfort of their own home. This year, to ensure health and safety, the conference will be held virtually once again.

This event is for patients, families, and researchers who are looking to learn more about patient care, education, and the latest research.