A Non-Profit Started Out Of Frustration
A non-profit started out of frustration, Rare Disease Renegades is ready to do everything possible to speed up science and help ensure people suffering from rare diseases can get the cures they desperately need.
Chatham, New Jersey, March 23, 2022 - Rare Disease Renegades is a non-profit founded by Billy Lester of Chatham, New Jersey and his family, that aims to fill the gap between rare diseases and their cures.
“We got our start when a family member was diagnosed with a rare form of muscular dystrophy, Duchenne Muscular Dystrophy (DMD), and realized that there was no cure, only treatments to slow the progression of the disease. It was incredibly frustrating,” said Billy. ”And we quickly realized we were not alone in our frustrations. More than 7,000 rare diseases affect more than 30 million people in the United States. Millions of people who — even when they have access to treatments — can’t get the cure they desperately need.”
Unfortunately, rare diseases are often life-threatening and most do not have FDA approved treatments or cures. In many cases, treatments and cures that show a lot of promise, like CRISPR, are simply too specialized and not able to get the kind of pharmaceutical investment they need to succeed.
Billions and billions of dollars are spent on disease research every year. But funding for rare disease research, interventions and cures often have to focus on individualized solutions and are simply not economical. As a result, they often get overlooked and neglected. Rare Disease Renegades is here to help that research and those cures get the funding they desperately need.
“People suffering from rare diseases simply don’t have time to wait,” says Billy Lester. “And we’re not going to stop until everyone suffering from a rare disease can get the cure they need.”
To raise the money needed to support their mission, Rare Disease Renegades is planning three fundraising events in 2022. Join us on April 3rd for a live virtual concert on Facebook, ride with us on June 11th on the Renegade Ride through Morris County, NJ, and Be A Renegade at the Twin Cities Marathon and 10 Mile Race October 1st. Visit rarediseaserenegades.org for more information about the Rare Disease Renegades, information about the events, to sign up and to donate.
About Rare Disease Renegades
Rare Disease Renegades helps scientists get the funding they need to radically accelerate research, treatments and cures for rare diseases.
