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

When he was six years old, Kavi Gandhi lost his older brother to I-Cell (Mucolipidosis II), a terminal rare genetic disease. At the Yash Gandhi Foundation, the organization his parents founded in memory of their son, Kavi works to raise awareness, build patient advocacy and sustain research efforts in finding a cure for the disease. In the last three years, through the annual 5K fundraiser Kavi organizes, the Foundation has raised over $260,000 for I-Cell research.

Marilee Leishman, GM1 (GM1 gangliosidosis) Parent, Advocate

Shortly after two out of her three children were diagnosed with GM1 (GM1 gangliosidosis), Marilee Leishman joined the Board of Directors of the Cure GM1 Foundation. She has contributed her time and talents in numerous ways to help advance research of the disease. Marilee composed and performed an original song titled "Sweet Angels (Cure GM1)", which highlights the personal struggle associated with a rare disease diagnosis. All proceeds raised through downloads of the song are donated to the Cure GM1 Foundation.

Scott Lewia, Sanfilippo syndrome (MPS III-A) Advocate

A high school wrestling coach for over 30 years, when Scott Lewia learned that a former student athlete’s son had been diagnosed with Sanfilippo syndrome (MPS III-A), he made it his mission to raise awareness about the rare disease. Scott and his team raise money at their wrestling matches and at local community fundraisers. At the end of their season, they donate all of the funds raised to the Cure Sanfilippo Foundation.

Brian and Sherri Manning, Tay-Sachs Disease, Parents, Advocates

Brian and Sherri Manning lost their son Dylan to Tay-Sachs when he was only four and a half years old. Along with their other children Brady, Devin and Mia, Brian and Sherri continue to celebrate Dylan’s life through fundraising and community outreach. Both Brian and Sherri have active roles at the National Tay-Sachs & Allied Diseases Association (NTSAD), with Brian serving most recently as President of the Board, and Sherri as a family advocate.

Congratulations to each of the recipients. We thank you for your tireless work for rare disease awareness.

Last update: 02/2019