Our Mission

The Orphan Drug Act defines a rare disease as a disease or condition that impacts less than 200,000 people in the U.S. Other countries may have their own official definitions of a rare disease. For example, the European Union defines a disease as rare when it affects less than 1 in 2,000 people. There are about 7,000 known rare diseases and collectively, about 1 in 10 people (or 30 million people) in the U.S. have a rare disease. Lack of awareness around rare diseases patients, physicians and the public make it harder to identify symptoms and receive available treatments.

Friedreich’s ataxia (FA) is one of those many rare diseases. It is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States has Friedreich's ataxia. It is estimated there are 4,000 individuals affected with FA in the U.S., and 15,000 affected individuals worldwide.

Growing up, a friend's daughter was an adorable and vivacious child, but unfortunately, she developed a genetic disorder when she reached her teenage years. Despite her illness, Hasitha Illa, an exceptional young woman, is undergoing treatment and using her voice to raise awareness about the disease through public speaking events, blogs, and social media platforms.

We would like to do our part by donating a small percent of your total purchase to Friedreich’s Ataxia Research Alliance (FARA). We cannot do it ourselves. We need your help and together we can make an impact in bringing awareness about the symptoms, treatments, physicians, and community.