HCG was a proud sponsor of this year's FA Woodstock, an annual event dedicated to raising awareness of Friedreich’s ataxia (FA), a rare degenerative neuromuscular disorder. This year's event brought together 120 people of all ages together to share their experiences of dealing with the disorder that remains one of rarest in the U.S.
The event is now in its eighth year and was originally conceived by Tom and Paula Hook, whose daughter, Kati was diagnosed with FA when she was 19, as a way to build a strong community for people with FA and their families. FA Woodstock has grown each year since 2010, when 30 people came together at the Flying H Ranch, a 20-acre horse ranch run by the Hooks. This year, FA families from as far away as France and England and as nearby as Chicago, as well as 25 volunteers from all across northern Indiana gathered July 22 for the three-day event.
“We continue to host FA Woodstock because we believe it gives these kids, and also the adults, a real community,” said Paula Hook. “One of the most painful side effects of FA is that it tends to isolate the person from other people. FA Woodstock reverses that and shows them they are part of a community that loves them for who they are.”
The event is dedicated to fun: Fishing, tie-dying T-shirts, swimming, horseback riding, games, and more. There were also readings of A DAY IN MABEL’S PAWS, a children’s book published this year by Kati Hook. Besides raising awareness of FA, the colorful book shows how a positive mental attitude and creativity can help FA’rs lead a full life.
“We know first-hand the struggles that FA creates in families,” said Tom Hook. “But we also know that there is strength in numbers. Our family is now part of the wider FA family, and by using FA Woodstock as an annual meeting place, we will continue to help families go through this together.”
FA affects about one in 50,000 people in the U.S. FA Woodstock works in partnership with the Friedreich’s Ataxia Research Alliance (FARA), an advocacy group outside Philadelphia that raises money for research. As reported in The Washington Post last year, FARA uses FA Woodstock as an opportunity to pull blood, DNA, and cell culture samples to enter into a global registry that will help clinical trials.