In November, Sara Ferrarone, of Rochester, New York, died at 26 following a lifelong struggle with Friedreich’s Ataxia.
Friedreich’s Ataxia (FA) is a debilitating neuromuscular disease that entails gradual loss of all mobility, progressively worsening speech dysfunction, hearing loss and vision loss. Sara’s younger sister, Laura— one of my oldest friends and an extraordinary young woman— also has FA.
To learn more about Sara Ferrarone, please watch the news video clip in which she was featured, Leaving a Medical Legacy.
Shortly after Sara’s death, I reached out to a fellow senior, Galen Dole, and a member of the talented acapella group (the University of Rochester YellowJackets) to see if the Jackets might be willing to lend their voices to a cause. It was coincidence that Galen’s 19-year-old sister and a promising film student, Marlise Dole, has FA as well. With that discovery of an unlikely connection, Concert for a Cure came about.
We began planning in January and actively fundraising in March. Our initial goal was to have $10,000 by Laura’s 23rd birthday, April 11th. We set about organizing a grassroots campaign, and we reached out to thousands of people via letter writing, email, facebook, twitter and by alerting all of our friends, family members, classmates and professors of the cause.
We learned quickly how difficult it can be to generate meaningful awareness and appropriate action— particularly with regards to rare, little known, easily misspelled diseases. Prior to our main event, we had $8,000 raised for the Friedreich’s Ataxia Research Alliance. The Concert for a Cure was a tremendous success— attended in full, and with two local news stations there to record it. You can watch our speeches and the YellowJackets singing happy birthday to Laura at 1:49: https://www.ustream.tv/recorded/30936603.
The response has been incredible. We’ve received notes of encouragement and thousands more to support vital research. We now have over $17,000 for FARA, and we are truly humbled by the generosity of others. Much of what has been raised is the sum of small bills, of $5 or $10 contributions. We know that small bills by themselves cannot cure a disease, but we are hoping that taken together and carried on— many, many small bills, coupled with continued activism will serve as an integral part of the search for a cure. It is in that spirit of optimism that we have doubled our initial fundraising goal.
We will keep our GoFundMe page open until May 1, 2013.
We hope that you will answer our call to action by giving a small amount or by passing this story along. For these efforts to be meaningful for the 15,000 people across the globe living with FA, they have to be continued, and for that, we need your help.
Sarah Gelbard & Galen Dole University of Rochester | Class of 2013