About Duchenne and Jett Foundation
Duchenne is the #1 most common fatal genetic disorder diagnosed in childhood. It is a very progressive muscle wasting disease primarily affecting boys. Most boys are wheelchair dependent by age 12 and rapidly lose all muscle function. The respiratory system is affected and the heart, a muscle too, eventually fails. Most boys with Duchenne do not live beyond their 20's. There is no cure. It affects 1 in 3500 boys; about 20,000 boys in the US alone are effected. On a positive note, this is the most exciting time ever for the Duchenne community as we have recently had our first drug approved for use in about 10% of Duchenne patients. And many more promising treatments are currently in clinical trials. This is a critical time to support research and continue to push it to successful drug development and more FDA approvals so that treatments become available for the entire Duchenne population.
Calvin’s parents, Cindy and Curt Quitzau, have found tremendous support by working with the Jett Foundation and Christine McSherry who, after her son Jett was diagnosed, started the foundation dedicated to fighting this devastating disease. In 2008, The Jett Foundation, in collaboration with the Massachusetts General Hospital in Boston, opened a new multidisciplinary coordinated care clinic dedicated to helping boys with DMD. This clinic is the first of its kind in New England. This clinic has gone on to be named a "Certified Duchenne Care Center" by Parent Project Muscular Dystrophy.
In 2011, with tremendous national and international impact, the Jett Foundation initiated the collaboration of several Duchenne specific organizations to form The Duchenne Alliance. This unique group of organizations created the first ever Duchenne Dashboard which shares knowledge, leverages resources, and streamlines business practices to help fund and fuel Duchenne research forward faster.
By visiting JettFoundation.org, you will learn more about their current focus and their programs serving the otherwise unmet needs in the Duchenne community. Educational Roundtables, Camp Promise, Gals for Cal Livin' Large Fund, Jett Giving Fund, and the Jett Setter program. Please be sure to visit Jett Foundation for the specifics and how to get involved.