Friedreich’s ataxia is a rare, genetic condition that affects approximately 5,000 people in the United States and 15,000 around the world. Debilitating and progressive, it is often diagnosed during childhood.
The Friedreich’s Ataxia Research Alliance (FARA) has been a consistent voice for those who suffer from FA. The organization is at the forefront of research dedicated to finding a cure for the condition.
Currently, only one treatment option is available for those who have FA. The U.S. Food and Drug Administration approved Biogen’s Skyclarys, in 2023, for individuals 16 years old and over. While a significant milestone, the drug’s approval is a reminder that there is much more work to be done.
On October 19, FARA will host its 16th Energy Ball, at J.W. Marriott Tampa Water Street, to raise funds for research efforts.
Proceeds from the ball and auction will benefit FARA, as well as the USF Health Ataxia Research Center. Individuals are welcome to contribute to the silent auction and donate gift certificates, memorabilia, trips, experiences and merchandise.
ABC Action News’ Wendy Ryan will be the event’s mistress of ceremonies and Blonde Ambition will appear as the night’s live entertainment. There will be a selection of speakers including Vinik Sports Group and the Tampa Bay Lightning Chief Executive Officer and Vice Chairman Steve Griggs, alongside his wife Janell, and FARA Energy Ball co-founders, Paul and Suzanne Avery. Paul is currently the organization’s board chair.
The first Energy Ball was held in 2009. Established by the Averys and a group of friends, the gala was created to support FARA’s mission while giving guests a memorable night.
“We are really grateful that the Tampa community’s been beside us this long and has invested so much, particularly, in clinical research and that they’re with us going forward,” says Felicia DeRosa, vice president of fundraising and communications for FARA.
Also on October 19, the USF Health Ataxia Research Center, in collaboration with FARA, will host the FA Research Reception Brunch at USF Health’s Center for Advanced Medical and Simulation (CAMLS). Free to attend, guests will be educated on FA and current research projects. There will be multiple speakers including USF Health researchers, FARA executives, representatives from pharmaceutical companies and individuals with FA.
Awareness and understanding of FA has grown in recent years, including the many complications that come with the disease. The condition shortens the lifespan of those who are diagnosed but it also has numerous, life-altering symptoms. The most common include difficulty with balance and movement. Many people who have FA need to use transportation aids such as a wheelchair or a walker. Other symptoms include heart conditions, diabetes, dysarthria (slurred speech) and scoliosis.
Skyclarys is just the beginning of accessible treatment options, says DeRosa.
“We’re energized by this first approval and that there is a path to getting treatments approved, but we still know there’s a lot of work for us to do,” DeRosa explains. Considering that FA is frequently diagnosed in early childhood, FARA wants to ensure a treatment is available for children under the age of 16.
FA is genetically passed through a recessive pattern, according to FARA. If a child inherits two mutated copies of the FXN gene from both of their parents, they can be diagnosed with the condition. This mutation impacts the amount of frataxin created in the body, resulting in FA symptoms.
FARA was founded in 1998, only two years after the FXN gene mutation was discovered. Since the organization’s launch, $20 million has been raised for research.
For more than 25 years, FARA has been fighting, every day, to improve the lives of individuals affected by FA. Research projects are underway and will hopefully lead to a cure. By attending, donating or contributing to the FARA Ball, you can have an impact for years to come.
For more information, visit curefa.org. ♦
