
I was diagnosed with FA in 1992. Times were very different for me and my family prior to FARA’s creation in 1998. I graduated High School in ‘98 and was navigating my teen years on my own. There was no hope and no community; no one even knew what FA was and there were definitely no researchers, pharmaceutical companies, or scientists involved.
In 2004, when I was finished with college, I moved out of my parents house, got a job where I remained for 17 years until I was laid off. I suddenly had more time to focus on myself and my fundraising efforts.

Unfortunately, after eight holes…rain, thunder, and lightning came which obviously meant ending the golf. Everyone went back inside where they cooked an earlier than expected meal, since all of the players had already paid for their 18 holes and dinner.
But, thankfully, the day was not lost! We had a lot of raffles and silent auction items. We were also able to have a nice lunch with FAmilies from all over New England and 2 FARA board members. It turned into a day reminding us it is not about golf but the cause! We raised a total of $34,000 for FARA. I am already getting ready for next year, Sunday September 8!
Written by: Erin O’Neil