Rylee Noble: A tween with the rare disease Mucopolysaccharidosis (MPS) was honored for her efforts in advocating for education, much-needed awareness, and research for this genetic disorder that causes a deficiency of an enzyme required to break down certain protein. Without the needed enzyme, protein builds up in the bones, organs and central nervous system.
Following her diagnosis, Rylee and her family began to raise awareness and teach others about the signs and symptoms of this rare disease by hosting a Clay Shoot benefit. In just one day, they raised $130,000. Lead by Rylee, the Noble family began educating others and have been advocates for MPS to be added to the Texas newborn screening panel. By the end of 2020, Rylee’s goal is to have a non-profit organization up and running. Rylee is also an aspiring dancer who finds the art of dance an outlet.
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.