Keith’s Legacy

Keith was the inspiration for the formation of FARA. Keith’s diagnosis of Friedreich’s ataxia at the age of 11 led his step-father and mother, Ron and Raychel Bartek, to establish this organization. Keith’s battle with FA ended January 22, 2010, at the age of 24 due to congestive heart failure. Even during the final and very challenging months of Keith’s life, he courageously encouraged Ron and Raychel to continue pursuing treatments for others with FA. The creation of FARA was their legacy. FARA’s impact in the future can be yours.

Keith pictured (right) with step-father Ron Bartek (left).

The Bartek Legacy Circle

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.

Bartek Legacy Giving Circle Logo

There are many ways to include FARA in your planned giving

  • Bequests
  • Charitable Remainder or Lead Trust
  • IRA Charitable Rollover (if 70 ½ or older)
  • Beneficiary Designations
  • IRA account
  • 401K
  • Life insurance
  • Donor Advised Fund

FARA + FreeWill

If you do not have an up-to-date plan in place, you can create your will for free using this trusted online resource from our partners at FreeWill, which makes it simple to start your legacy with FARA in a few minutes online. If you would prefer to finalize your will with an attorney, you can also save time with your lawyer by using FreeWill to document your wishes first.

If you’ve already included a gift to FARA in your will, we would love to thank you, make sure we understand your wishes, and welcome you into the Bartek Legacy Circle. Please let us know by clicking the button below to fill out a brief form.

Freewill logo

Beneficiary Designation

Some assets, such as an IRA, 401(k), or life insurance policy, are not included in your will. By naming FARA as a beneficiary of one or more of these non-probate assets, you can help facilitate research for FA. Organize your assets and receive instructions on how to update them with this free tool.

Naming Information for Bequests

To the Friedreich’s Ataxia Research Alliance (“FARA”), a not for profit, tax-exempt organization incorporated in the District of Columbia in 1998, having as its principal address 533 W Uwchlan Ave, Downingtown, PA 19335, and tax identification number EIN: 52-2122720, I [Name], of [City, State ZIP] hereby give and bequeath the sum of $___ or ___ percent of my estate for the general purposes of FARA.


For any questions about legacy giving, please contact: Felicia DeRosa, VP- Fundraising & Communications, 484-879-6160,

FARA does not provide tax, legal, or financial advice. Please consult your own advisors regarding your specific situation.