Recognizing the inspiring patient advocacy efforts of individuals, families and friends in the rare disease community
Organizing a five kilometer run. Writing a song. Rallying a high school wrestling team. Celebrating life. These are all ways the recipients of our 2019 TORCH Awards took their personal experience with a rare disease and transformed it into a platform for advocacy.
First established in 2017, our TORCH Awards program was created to recognize patients, caregivers, families, and supporters in the rare disease community who are dedicated to raising awareness of lysosomal storage disorders. Nominations can come from individuals or organizations, and submissions are reviewed and winners selected by a third-party, Scholarship America. Sanofi Genzyme donates five thousand dollars to a non-profit of the recipient’s choice.
“Our TORCH Award recipients have made significant contributions to the LSD community through disease education, fundraising, and outreach,” said Shannon Resetich, Head of US Rare Diseases and Rare Blood Disorders for Sanofi Genzyme. “I am humbled by their remarkable stories of resilience and advocacy.”
Here are the 2019 TORCH Award recipients:
Kavi Gandhi, I-Cell (Mucolipidosis II) Sibling, Advocate
Marilee Leishman, GM1 (GM1 gangliosidosis) Parent, Advocate
Scott Lewia, Sanfilippo syndrome (MPS III-A) Advocate
Brian and Sherri Manning, Tay-Sachs Disease, Parents, Advocates
Congratulations to each of the recipients. We thank you for your tireless work for rare disease awareness.