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5th Annual Race for Matt and Grace

The 5th Annual Race for Matt & Grace took place on Saturday, September 20, 2014 in Bryant University in Smithfield, RI. This 5K Race is held in honor of Matthew DiIorio and Grace Hopkins and to benefit those affected with FA and the research alliance group, FARA. This was my third year in a row attending the event, and each year it amazes me how much love and support is given to both the DiIorio and Hopkins families.

Being newly diagnosed with Friedreich’s Ataxia only three years ago, was a tough time for me. I was still attending college at Johnson & Wales University in Providence, RI, which was five hours from home. Not having my family close to me with the new struggles and questions of living with FA, I wanted to get involved. I saw there was the 3rd Annual Race for Matt & Grace and I decided to go with my sister to connect with families and learn more about FARA. Looking back now, I am so grateful to have connected with the DiIorio Family and other families because now I have lifetime relationships with them. Attending the 5K Race of Matt & Grace is a yearly tradition my family and I will share.

Friends of Jerod Reverse Draw

On September 6th, the Friends of Jerod held our 4th Annual Reverse Draw to raise funds for research to find treatment and a cure for Friedreich's Ataxia...and the results were amazing! With over 300 in attendance, the night not only raised funds, but also raised awareness regarding the facts about FA and made people aware that our researchers are in a race to find a cure for this life-threatening disorder. A delicious dinner was catered by the ever-generous Outback Steakhouse, beverages from Pepsi and followed with dessert donated from Frugatti's Italian Restaurant. Over 25 incredible gift baskets and lots of gift cards from supportive donors were given away throughout the event with our wonderful emcee, Mike Hart of ABC 23, KERO Bakersfield.

Pfizer and FARA: Rare Disease Community Outreach

On September 9, 2014, FARA was invited to visit Pfizer as part of their Rare Disease Community Outreach Program. I was lucky enough to be asked to participate on FARA’s behalf and share my personal stories about Friedreich’s Ataxia (FA) and the impact the disease has had on both my life and my family. Pfizer is one of the largest pharmaceutical companies in the world; they have committed to drug discovery in FA and they and we are hopeful that those discoveries will be part of the treatments that will someday lead to a cure!

USF Scientific Symposium and FARA Energy Ball 2014

The 6th annual FARA/USF Health Scientific Symposium took place at the USF Health Center for Advanced Medical Learning and Simulation (CAMLS) in Tampa, FL on Thursday, September 4, 2014. Researchers, clinicians, patients and families gathered together to hear upcoming research, possible treatments and patients’ inspiring stories of living with Friedreich’s Ataxia. This year’s focus was “what a difference a year makes” and all these three components were touched upon.

The FARA Energy Ball is an event held to benefit funds and research for FARA and USF Ataxia Research Center. $1.8 million was raised for research on Saturday, September 6th! Please read below for personal experiences shared by those living with FA...

11th Annual Fuzzy Buzzy Golf Tournament

Sunday, September 7, 2014 was the 11th Annual Fuzzy Buzzy Golf Tournament. I am amazed every year at the length this tournament has been going. When the Fuzzy Buzzy started, there were not many other FARA fundraisers, but looking at the calendar these days, it’s a packed schedule. Once again, this year, was a great success. We raised $20,000 for FARA and even more awareness! This brings the 11 year total to $125,000, furthering research to find a cure for FA.

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