Tissue Donation Program - Friedreich's Ataxia Research Alliance

Opportunities to Donate

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). Download this tissue request 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.

We understanding you may have questions about making these important decisions about donating tissue at death. FARA staff is available to answer any questions you may have. Contact us at tissuedonation@curefa.org or call the office during work hours at (484) 879-6160.

FARA partners with the University of Maryland Brain and Tissue Bank (UMBTB) for all tissue donations made after death. UMBTB is part of the NIH-funded NeuroBioBank network. UMBTB focuses on neurological diseases that present in childhood and collects, stores, and distributes brain, spinal cord, and other tissue impacted by a disease like FA. Please see the link to learn more about UMBTB https://www.medschool.umaryland.edu/btbank/brain-donation/

If you are interested in donating, please email btbdonors@som.umaryland.edu for the link to their online registration forms or by calling (410) 706-1755.

** If death is imminent or has already occurred and you are not yet registered with UMBTB, please indicate this on your inquiry email for the link and call them at (410) 706-1755 before completing the forms. A staff member can be reached 24 hours a day in cases of death or imminent death emergencies.

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

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.