Tissue Donation for Research
People with FA and their family members are invited to inquire about tissue donation for research. Tissue may come from a surgical procedure or at the end of life. Friedreich's ataxia (FA) is a very complex disease that affects the spinal cord, nerves, brain, heart, muscle, bone, and insulin-producing cells of the pancreas. Therefore, tissue from any of these affected organs can provide valuable insights into the disease process and facilitate the development of therapeutics.
Surgical Tissue Donation
The Children's Hospital of Philadelphia (CHOP) has an open study that accepts tissue donation from individuals with FA who have a surgical procedure performed (e.g., muscle tissue). These surgical procedures can include things like scoliosis surgery and tendon transfer surgery. They are also looking for individuals with FA who have had biopsies performed in the past at other hospitals (e.g., cardiac or muscle biopsy). See this link to learn more about this study.
Autopsy Tissue Donation
In addition, when a person dies from the complications of FA, a rapid autopsy will allow researchers to collect important organs for detailed study. Previous donations of organs upon death from individuals with FA have provided us with a much greater understanding of FA and how the condition affects the brain, spinal cord, eyes and heart. Such donations are still needed as new technologies are available to study these tissues and in some cases, it is possible to evaluate new treatment approaches. The goal is to learn as much as possible about FA and apply new knowledge to diagnosis, treatment, and care of other patients with the disease. Many recent breakthroughs are based on research that has only been possible because FA families have donated tissues. Please email
Parent Perspective
Raychel is a parent who has gone through this process. She offers her compassion and wisdom as she helps organize the donation. Studies of her son 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 personal story of Keith's donation
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.
Tissue Bank Access
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 directly to Dr. Koeppen (see contact information below) or by contacting FARA at
Arnulf H. Koeppen, M.D.
Research Service (151)
VA Medical Center
113 Holland Ave
Albany, N.Y. 12208
Tel. 518-626-6377 (office)
Tel. 518-626-5474 (lab)
Cell phone 518-229-4765
FAX 518-626-6369
e-mail:
