Rochester Undergrads Raise $20K for Rare Disease Research
University of Rochester student Sarah Gelbard is on a mission to raise awareness of Friedreich’s ataxia (FA), a debilitating neuromuscular disease. Her best friend, Laura Ferrarone, struggles daily with the effects of FA, while Laura’s sister, Sara, also suffered from the disease and passed away in November at the age of 26. The strength of the Ferrarone family, and their work raising thousands of dollars for FA research inspired Gelbard to do the same. She found a powerful ally in senior YellowJacket Galen Dole, whose younger sister Marlise was diagnosed with FA at the age of eight. Together, they set a goal of raising $10,000 for the Friedreich’s Ataxia Research Alliance (FARA).
All proceeds from the YellowJackets’ April 5 concert were donated to FARA, as well as money raised through the sale of limited edition YellowJackets fan t-shirts. Gelbard and Dole also started a page through GoFundMe, which allows visitors to make online donations.
“Like Sarah, I have watched someone I love lose her mobility and confront hardships that no one should have to confront—all with the sunniest of dispositions,” says Dole. “In honor of Sara and Laura Ferrarone and Marlise, the YellowJackets are proud to raise funds for and awareness of this rare, devastating, and life-shortening disease.”
A nonprofit organization dedicated to curing Friedreich’s ataxia, FARA grants and activities provide support for research, pharmaceutical/biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances.
“I know that the curing of a tremendously complicated genetic disease is, well, tremendously complicated—but I also know that it is possible,” Gelbard says, pointing to the Ferrarone family’s work creating a worldwide patient registry for the disease as an important first step. “Sara was the first person to be entered into the worldwide patient registry in Rochester, and perhaps Laura will be the first person to see the benefits of a cure.”
In a little less than two months, Gelbard, Dole, and the YellowJackets have raised more than $20,000 through GoFundMe and concert proceeds. But, their work isn’t done yet. This week, they are making one last push to raise funds through GoFundMe before closing the page on Wednesday, May 1.
“We hope members of the Rochester community will continue to answer our call to action by giving a small amount or by passing this story along,” Gelbard says. “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.”