Noah driving a Lego car  Mathew  FA

FA Organ and Tissue Donation Return to Index
I am an organ donor. It says so on my driver's license. So when I die any usable-by-others' parts of my body will be quickly "harvested" and sped to waiting recipients, whose lives I hope will be wonderfully changed. That will please me.

In the world of Friedreich's Ataxia FA'ers have a similar opportunity plus an even higher calling.
  • According to Dr. Susan Perlman in spite of FA some FA'er body parts might be candidates for the general population transplantation. "No problem donating organs that are clinically unaffected by FA - corneas, skin, kidneys, liver, lungs, bone. Not heart." she has said. Of course the particular organ donation organization would have the last word on acceptability of any donation. Shop around.
  • And/or they can participate in the FARA-sponsored Organ/Tissue Program run by Dr. Arnie Koeppen. If there is time and the proper planning/organizing, in their final act of giving FA'ers can provide tissues that may travel the world and be used by a diverse set of FA researchers working on new FA treatments and ideas for new FA treatments.
But it takes some bit of pre-planning for either/or/both donations! From the moment the heart stops beating tissues become oxygen starved. Time is of the essence to put those FA-sensitive tissues in protective fluids and shipped off to Dr. Koeppen to be safely frozen for later research use.

So if the FA'er or parent is interested, what next??
  • Go to and contact Raychel for more general information and guidance for the FARA tissues program to understand the details of that program.
  • For general population organ donations contact any of several donor organizations to understand their programs, including any willingness to be the harvesting/shipping entity for Dr. Koeppen. Raychel is aware of one FA parent who has a plan in place for that option and can give you some general advice.

Valerie: I'm very grateful that Phillip was able to give one final gift to his FAmily by donating his tissues to Dr. Koeppen. I like to think that Phillip is still helping to find a cure for FA, and it gives me some small sense of solace from an otherwise devastating loss.

Mary-Lisa: To my great sadness, we continue to lose kids every year. I would like to remind all of you of the importance of research that could not be done without the organs from our loved ones.

Raychel: Prior to his death, Keith made it very clear that he wanted his tissues and organs donated for FA research. He hoped he could make a difference with his donation and that one day no one else would have to live or die with FA.

Paul: Last night as I sat in Brianne's apartment watching and listening on the baby monitor I was reminded how fragile her connection to life is becoming, which reminded me I was glad I got Brianne's tissue donation set up now.

Kathy: My family would like to be tissue donors for FA research. I just don't know the process. Could you please steer me in the right direction? I decided to sign up for this after my brother-in-law died suddenly in a motorcycle accident this week. I thought, what am I waiting for?

Dawn: I was able to get everything arranged to have Clint's organs and tissue donated for research.

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