20th Annual Fuzzy Buzzy Golf Tournament
Dear Friends:
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 Ataxia
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 8, 2024 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 future.
Friedreich's ataxia (FRDA) is a rare, genetic, neurodegenerative, multi-system, life shortening disorder. Five thousand people in the United States have FA. Onset of symptoms is usually between the ages of 5 and 15, sometimes even earlier and sometimes significantly later.
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,
Erin O'Neil
617-605-5555
Donations of any kind can be sent to:
Eric Jamieson
7 Marshall Rd
Stoneham, MA 02180
FARA is a 501 (C)(3) tax-exempt organization – all contributions are fully tax-deductible.
TAX ID#52-2122720
For more information visit cureFA.org