A torch symbolizes hope. For those in the rare disease community, hope is powerful and often deeply personal. We are humbled to honor the advocates who use hope as a beacon to bring others into their cause and as an instrument of change for the entire community.
In the rare disease community, there are many who carry a torch because of their efforts to transform outreach and create hope. To recognize their inspiring advocacy efforts, we have established the TORCH (Transforming OutReach and Creating Hope) Awards in 2017. Nominated by individuals or organizations, winners are selected by Scholarship America, a third-party organization, and Sanofi Genzyme donates $5,000 to a non-profit of the recipient’s choice. Over the past four years, we have donated more than $85,000 to TORCH winner’s selected organizations.
A rare disease diagnosis is life-changing for families and our 2020 TORCH Award winners have further transformed their lives into a platform for advocacy. A teen transformed into a bold spokesperson and lobbyist. A police officer and parent turned into national patient advocate. A mom making it her mission to change the landscape of research for her boys. A registered nurse and mother of two raises that sets her heart and heat to raising funds and providing families hope. A Teacher, advocate and artist at age 11.
These are the incredibly courageous advocates for the rare disease community. We are humbled by their significant contributions to the rare disease community and their personal resiliency. Congratulations to each of the recipients!
2020 TORCH Award Recipients
“My name is Evren Ayik. I am 18 years old and I have ASMD. About two years ago, I started my journey advocating for ASMD patients when I had the opportunity to speak to the U.S. Food and Drug Administration (FDA) about how ASMD impacts my life and why treatment is so important. After the FDA, I have been invited to speak at more than four events, including the National Niemann-Pick Disease Foundation (NNPDF) conference and Wylder Nation’s gala, about growing up with ASMD and encouraging them to keep working hard for all people with ASMD. It is not always easy to share about my life with ASMD. However, telling my story can accomplish my goals of raising awareness of ASMD and inspiring others to persevere. I will continue to use my voice to advocate for people living with ASMD. I’m even working on a children’s book with my mom about life with a rare disease.”
Mark Dant is the Chairman of the Board for EveryLife Foundation for Rare Diseases, a science-based advocacy organization dedicated to accelerating biotech innovations for rare disease treatments through science-driven public policy. Mark is also the founder and Volunteer Executive Director of the Ryan Foundation and former President and CEO of the National MPS Society. Mark believes all of us have the power to turn action to hope and hope to reality.
In 1992, Mark and his wife Jeanne founded the Ryan Foundation after their three-year old son Ryan was diagnosed with MPS I. At that time, life expectancy for children with MPS I was less than 15 years. Mark began an immediate global search for scientists and philanthropists who might aid in finding a treatment in time to help children and families living with MPS realize the promise of tomorrow. Ryan is now 31 years old and the Ryan Foundation has funded millions of dollars in rare disease research. In addition, Mark and his family have been key advocates speaking to the FDA and successfully championed the Ryan Dant Health Care Opportunity Act, a bill designed to help those living on Medicaid assistance become gainfully employed.
After seven of her family members where diagnosed with Alport syndrome, a rare kidney disease, including herself and two of her children, Sharon Lagas co-founded the Alport Syndrome Foundation. She worked tirelessly to bring families affected by Alport syndrome together and to provide them with support, resources and education. Under Sharon’s leadership, the Alport Syndrome Foundation developed an expert medical and scientific board, along with a research funding program to stimulate potential new treatments. Since the Foundation was launched in 2007, 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.
Melanie McKay is a wife, mother of two boys, registered nurse, and one of the founders of Ryker’s Foundation for Pompe disease. Melanie started advocating for Pompe disease after her youngest son Ryker was diagnosed with infantile-onset Pompe disease (IOPD). Ryker’s Foundation aims to spread awareness by sharing personal stories and also serving, advocating and supporting the advancement of research. Melanie has supported many families with newly diagnosed children, advocated for newborn screening, and raised more than $20,000 for Pompe disease research.
“My name is Rylee Noble and I am 11 years old. In January 2019, I was diagnosed with Mucopolysaccharidosis (MPS type 1 or Scheie Syndrome). In October 2019, we hosted an event to benefit to raise awareness and teach about the signs and symptoms of MPS I. We also educated people about our fight for MPS to be on the Texas newborn screening panel. In just one day, we raised $130,000! We have had a great response from companies and private donors wanting to help make a non-profit organization so that we can help support the fight for a cure and/or treatment for all MPS types. Our family goal by the end of the year 2020 is to have our non-profit organization up and running for our 1st annual Crushing Clays for MPS.”