FAMovement is focused on raising awareness and supporting scientific research in Friedreich's Ataxia.
The founder of our nonprofit organization, Vlad Ayriyan, was diagnosed with Friedreich's Ataxia at the age of nine. He spent much of his childhood and all of his adolescence dealing with the progression of the disease, watching his body worsen and weaken day by day.
The knowledge and understanding Vlad acquired about this debilitating disease throughout his life motivated him to start this 501(c)(3) nonprofit organization in the hopes of raising awareness, and eventually, finding a cure, or at least, a way to slow the progression of the disease for all. The funds raised by FAMovement will be donated to scientific research in Friedreich’s Ataxia to find a cure.
FAMovement Use of Funds
For support of research we donate proceeds to the internationally renowned Friedreich’s Ataxia Research Alliance (FARA), a national 501(c)(3) non-profit organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s Ataxia. Through this mechanism we rely on the accomplished scientific advisory board of FARA for deciding which research investments are most likely to yield optimal patient outcomes in the most rapid timeframe.
The state of research and development in Friedreich’s Ataxia has significantly advanced through the tireless effort of scientists, which have been funded by public grants as well as FARA. Currently there is an understanding on the molecular basis for the cause of FA and specific mechanisms leading to damage in patients, such as gene mutation, decreased frataxin production, iron sulfur cluster formation, and mitochondrial dysfunction. FARA is supporting the development of treatments aimed at each of these different mechanisms of damage. Because it is based on solid basic science discovery, this targeted approach to treatment has great potential. Furthermore, FA researchers believe that treatment will come in the form of a “cocktail” therapy - meaning that therapies aimed at the different mechanisms of damage have the potential to be used in conjunction with one another to treat the disorder. More information on the current state of drug development for Friedreich’s Ataxia can be seen on the FARA “pipeline” webpage here.