Sharon Lagas: A mom who made it her mission to change the landscape of research for her boys after three generations of her family were diagnosed with Alport Syndrome including her and her mom and her brother’s children. Sharon co-founded the Alport Syndrome Foundation. Under her leadership, the Foundation developed an expert medical and scientific board, along with a research funding program to stimulate potential new treatments. Since the Foundation was launched thousands of patients and family members have been connected all over the world and a network of international researchers focused on Alport Syndrome has been created.
Each year, an award is given to those who have served as a beacon of change for an entire community – the TORCH Award (Transforming Outreach in Rare disease and Creating Hope). Through Sanofi Genzyme, the TORCH Awards, established in 2017, recognizes inspiring advocacy efforts of patients, caregivers, families, and supporters in the rare disease community. In recognition of their efforts, Sanofi Genzyme donates $5,000 to each of the above award recipient’s non-profit of choice to further support their missions. The 2020 TORCH Award winners were recently announced.
Visit https://youtu.be/yce97Vj5I5U for more information about The TORCH Awards.