Subject: Sanofi Genzyme announces TORCH Awards winners
Time: 11:00 AM
Body: We are proud to announce the recipients of the first annual Sanofi Genzyme TORCH Awards!
The TORCH Awards recognize four individuals who have made a significant contribution to the LSD community by educating, empowering, advancing or connecting patients with information, resources or each other. Individuals were nominated for the TORCH Awards by both Sanofi Genzyme employees, as well as the external LSD community. Nominees of all ages were welcome, and Scholarship America reviewed all nominations.
We look forward to having all four TORCH Award recipients join us at Genzyme Center for Rare Disease Day February 28th to receive their awards. Sanofi Genzyme will also donate $5,000 to the nonprofit organization of each or the recipients’ choosing, subject to certain conditions.
Shaylee Boger has advocated for newborn screening as part of a patient panel who presented to the FDA. She will intern at Duke University this summer working with research for Pompe disease. Glenn O’Neill helped create the Cure Sanfilippo Foundation. The foundation has funded 10 research projects globally to date. Through the foundation, Glenn works to support and unite families affected by Sanfilippo. Sabrina Low-DuMond testified to various committees in the California Sate Congress to pass a bill ensuring newborn screening for any disease detectable in blood samples. With the help of Sabrina and other advocates, the bill was passed on September 16, 2016. Christine Waggoner helped create the Cure GM1 Foundation, connecting researchers and creating a GM1 patient registry. Christine and her husband created a video sharing their daughter’s journey with GM1, which has raised money to continue supporting research.
Join us on Rare Disease Day to learn more about Shaylee, Glenn, Sabrina, and Christine’s journeys as we celebrate their contributions to the Rare Disease community!