FA Woodstock, the summer retreat for FA families hosted annually by the Hook Family on the Flying H Ranch, is widely beloved by the FA Community. If you ask any attendee of the event since it began in 2010, they’ll likely share stories of new friendships and fun activities led by the Hook’s community like Mark and Paula’s tie-dye, Lori’s Craft Corner, Mike’s All Day Ice Cream Machine, or Elaine’s Seated Yoga.

However, there is someone who is also woven into the story of FA Woodstock who you will not know by name; a friend who learned of the connections that Tom and Paula Hook, their daughters, and their community fostered for hundreds of FAmily members. A friend who as she neared the end of her life was so moved by FA Woodstock- its generosity of spirit, the camaraderie of community, and the sheer gutsy resilience to fully live amidst loss- that she named FARA as one of the beneficiaries of her estate.

In early 2022, FARA received this significant and impactful gift just as we launched our most aggressive research agenda to date. The gift has helped FARA advance multiple research initiatives today in order to bring meaningful therapies for FA tomorrow. FA Woodstock fostered a stronger FA community and this generous donor enabled new and meaningful research insights that will lead to therapies for FA. Their collective legacy is the power of community and science, and we are deeply grateful.

Let Your Legacy Be Impactful Therapies for FA

Bartek Legacy Circle Logo FARA advances FA research across treatment approaches because we will need a cocktail of therapies to slow, stop, and reverse the progression of FA. Today and in the future, FARA is committed to the development of those diverse therapies as well as supporting access to treatments for all living with FA.

Create your personal legacy and maximize your lasting impact on the future of FA treatments. The Bartek Legacy Circle, named for FARA’s Co-Founders Ron and Raychel Bartek, celebrates donors who support the future of FARA with a gift from their estate or a life income gift.

If you have included FARA in your legacy giving plan, please let us know by filling out this form or contacting Felicia DeRosa at This email address is being protected from spambots. You need JavaScript enabled to view it. or 484-879-6160.