BENEFITING: Friedreichs Ataxia Research Alliance Fara
EVENT DATE: Sep 25, 2016
Hi Friends -
We are participating in the 2016 Zoot Westchester Triathlon to support an incredible organization, Friedreich's Ataxia Research Alliance ("FARA") - http://www.curefa.org/.
A dear friend of ours was recently diagnosed with Friedreich's Ataxia ("FA") and we are participating in this triathlon to support them and this organization at large.
Friedreich’s Ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. Only 5,000 people in the United States (1 in 50,000 people) and 20,000 people (1 in 350,000) in the world have Friedreich's ataxia. Most individuals have onset of symptoms of FA between the ages of 5 and 18 years. However, adult or late onset FA is less common (less than 25% of diagnosed individuals), but can occur anytime during adulthood.
FA typically results in the slow but steady loss of coordination in the arms and legs, general fatigue, vision / hearing impairment, and serious heart conditions, often leading to the required use of mobility devices and premature death.
FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.
While no cure for FA currently exists, there has been significant progress in advancing various forms of treatment and FARA has been the leading advocate and provider of funding for these programs.
We are excited to support this wonderful organization and ask for your help in this challenge.
James & Monica Rex