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2018 TORCH Awards

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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

Ryan and Jenny Bragg, GM-1 Gangliosodosis Disease Advocates

Ryan Bragg serves on the board of the Cure GM-1 Foundation and, along with his wife Jenny, is actively involved in spreading awareness and education about GM-1 Gangliosidosis. Their daughter Clara was recently diagnosed with GM-1 and the Braggs have hosted large-scale fundraisers in their hometown to support ongoing research for gene therapy with the goal of supporting a human clinical trial.
Shannon & Steven Laffoon, Founders, Wylder Nation Foundation

Shannon & Steven Laffoon, Founders, Wylder Nation Foundation

After losing their 3 year old son, Wylder, to Niemann-Pick Disease Type A, Shannon and Steven Laffoon created the Wylder Nation Foundation to continue the fight and raise awareness of this rare disease. Their goal is to further research and provide hope in the form of treatment options for lysosomal storage disorders.
Eileen Linzer in memory of her daughter, Quinn, Niemann-Pick Type A, Founder Quinn’s List

Eileen Linzer in memory of her daughter, Quinn, Niemann-Pick Type A, Founder Quinn’s List

Eileen Linzer and her husband Brett established the Quinn Madeleine foundation in honor of their daughter Quinn, who passed away at 15 months from Niemann-Pick Disease type A. They developed “Quinn’s List” to help facilitate memorable experiences for children under the age of 3 diagnosed with a terminal or life-threatening illness. The foundation also offers free carrier screening for Niemann-Pick types A and B to any family member of an affected child.
Ryan Lanier Craft, Pompe Disease Advocate and Mentor

Lanier Craft, Pompe Disease Advocate and Mentor

When her son Townes was diagnosed with infantile Pompe Disease, Lanier Craft was influential in helping to add Pompe disease to the newborn screening panel for the state of Mississippi. Lanier volunteers at hospitals, serving as a mentor and support system to other families receiving a new diagnosis. Lanier is known for being instrumental in helping families navigate their rare disease journeys.

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.