Honoring those dedicated to making a positive impact in the rare disease community.
Every day we encounter patients and their caregivers who amaze us. People who, when faced with a challenging diagnosis, choose to take action rather than settle into complacency. With an estimated 7,000+ rare diseases, each affecting fewer than 200,000 Americans, it’s often the families of those affected who dedicate their lives to finding answers, becoming champions in the rare community.
In an effort to honor those champions, in 2017, we launched a program called the TORCH Awards to recognize individuals who have made a significant contribution to the lysosomal storage disorder community by educating, empowering, advancing or connecting patients with information, resources or each other. Nominees can range from a parent working to make changes in legislation or by hosting a local fundraiser; to a child teaching her classmates about the LSD she lives with every day.
With so many acts of kindness in the rare disease community, often, the most difficult part is choosing only four recipients each year. Once all of the nominations are submitted, Scholarship America reviews all applications to determine who will be recognized on Rare Disease Day, February 28th. Honorees receive a donation of $5,000 made in their names to the nonprofit organizations of their choice.
We are proud to announce the 2018 TORCH Award winners:
Ryan and Jenny Bragg, GM-1 Gangliosodosis Disease Advocates
Shannon & Steven Laffoon, Founders, Wylder Nation Foundation
Eileen Linzer in memory of her daughter, Quinn, Niemann-Pick Type A, Founder Quinn’s List
Lanier Craft, Pompe Disease Advocate and Mentor
Congratulations to all the recipients! Today and every day we thank all those who give of their time and energy to advocate for the rare disease community. You inspire us.