Posted at: 11/29/2012 7:53 PM
Updated at: 11/29/2012 7:55 PM
By: Rebecca Leclair
It's always sad when a young person dies, but News10NBC wants to remember Sara Ferrarone of Pittsford. The 26-year-old died on Sunday from a rare genetic disease.
When News10NBC featured Sara Ferrarone as a freshmen at Roberts Wesleyan College seven years ago, she was already pretty famous on the world medical front because of what her parents started.
She was diagnosed with Friedrich's Ataxia at age seven, that's a rare neuromuscualr disease that robs a person of their ability to walk and speak. There was no cure and when her parents found out there was no treatment, they started working for change.
Jennifer Farmer, Friedreich's Ataxia Research Alliance, said, “When life throws you a curve ball, you have two choices and their choice was let's roll up our sleeves and do what we have to do.”
Farmer is a former researcher who has dedicated her life to Friedrich's Ataxia. But with only 15,000 people diagnosed in the world, it's been hard even finding doctors willing to do research. Bob and Margaret Ferrarone decided they'd pay them themselves.
So they started holding walkathons, raising $50,000, $60,000 and $100,000 a year. Margaret got her co-workers at EDS to use their computer expertise to build a software to create the first worldwide patient registry.
Farmer said, “At the time, we had no way of knowing how many people in the country or around the wold had FA and how to get into contact with them.”
And so with the help of RIT students working on their capstone project, they launched a website and put the Friedrich's Ataxia Research Alliance on the map.
Farmer said, “They built us our very first patient registry and Sara was our very first person entered.”
It's estimated the Ferrarone's helped bring in a quarter of a million dollars to help further FA research and get the very first clinical trial started to find a drug that might slow the progression of this genetic disease.
Ron Bartek, FARA founder, said, “The seed planted here in Rochester by the Ferrarones is now a multi- million dollar global operation.”
And while the search for a cure continues now in Sara's memory. Her friends and family know that what was started as a grassroots effort has already changed the world for good.
Sara's younger sister, Laura, has FA as well and her family is hoping that first clinical trial will produce a drug which can be approved by the FDA. They should know if that will happen in a few weeks.