A Parent’s Perspective

Raychel is a parent who went through this process when her son Keith passed at age 24. She offers her compassion and wisdom as she helps organize the donation. Studies of Keith’s organs and tissues have played a key role in understanding the effects of the disease on the heart and other organs.

Read Raychel's story of Keith's donation
Young boy blowing bubbles

Tissue Bank Access

FARA supports an autopsy program at the VA Medical Center in Albany, New York under principal investigator Dr. Arnulf Koeppen, a neurologist and neuropathologist. Dr. Koeppen has made significant contributions to our understanding of FA and other ataxias. Dr, Koeppen has provided insight about severity of illness and cause of death to many FA families who lost a loved son, daughter, brother, sister, wife, or husband. Dr. Koeppen collaborates with many FA researchers all over the world. He shares his experience with other investigators and makes available valuable FA tissues for ongoing and future research.

The tissue bank has fixed and frozen tissues from brain, spinal cord, heart, sural nerve, and pancreas of 30 individuals with FA. Requests for these tissues can be made by contacting FARA at  info@curefa.org or Albany Research Institute at ataxiarepository@va.gov.