20th Annual Fuzzy Buzzy Golf Tournament
Thank you, thank you! We are almost at the finish line and I hope and pray I see the finish line before my journey ends. Because of our years of fundraising we are almost there.
On Rare Disease Day last month, the FDA announced the approval of SKYCLARYS (omaveloxolone), a medication produced by Reata Pharmaceuticals to treat those with FA who are 16 years of age or older. This is the first approved treatment for Friedreich's to slow the progression.
The 20th annual Fuzzy Buzzy charity golf tournament, supporting FARA, (Friedreich’s Ataxia Research Alliance) is rapidly approaching. This year the tournament will be held on September 10, 2023 at the Windham Country Club. We are looking forward to welcoming back the numerous individuals and family members affected with FA, showing their support. We are ready for a great day of golf, numerous raffles and silent auction items, wrapping up the day with a delicious BBQ. When I was diagnosed in 1992 there was very little information or support for people and families dealing with FA. FARA was not founded until 1998! Until then there was no hope for a promising
Dealing with FA not only affects me but my family
and friends. Although I am confined to a wheelchair
I am not going to take this sitting down. I am fighting everyday living independently, going to the gym, eating healthy, even recently getting married! I do this because when the cure comes, I will be ready.
To accelerate the research and success of this event, my family and I are looking for donations of any kind. Your consideration is much appreciated.
Thank you for caring,