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Surgical Tissue Donation

If you are interested in donating your tissue from an upcoming surgery, your surgeon will need to be made aware of this prior to the surgery date.

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). To make arrangements to donate surgical tissue or to learn more about this study, download this flyer and contact the study coordinator.

Donate Surgical Tissue
Surgical Tissue Donation Process square
Leave a legacy

End-of-Life Tissue Donation

When a person dies, a rapid tissue collection will allow researchers to collect important tissues for detailed study. Previous donations of tissues upon death from individuals with FA have provided us with a much greater understanding of FA and how the condition affects various tissues, including the brain, spinal cord, eyes and heart. Additionally, donations from individuals who do not have FA provide tissues that serve as valuable comparisons in research.

Donations are always needed as new technologies emerge that allow for more advanced study of these tissues. In some cases, researchers can use donated tissues to identify and evaluate potential 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.

UMBTB Tissue Donation Process 1

How can I make arrangements to donate?

Register with the University of Maryland Brain and Tissue Bank

While planning a legacy tissue donation can be a difficult and emotional discussion, it can also be a meaningful experience for many people. When possible, it is helpful to plan in advance, as it takes some time to confirm the necessary arrangements are in place upon death.

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

To facilitate the donation process, FARA refers families to 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 follow this link to learn more about the tissue donation process at UMBTB.

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 call them at (410) 706-1755 regarding your immediate situation. Also, when you email  btbdonors@som.umaryland.edu for the link to their online registration, please include this information. A staff member can be reached 24 hours a day in cases of death or imminent death emergencies.

Register with the UMBTB

A Parent’s Perspective

Raychel is a parent who went through the end-of-life tissue donation 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

Frequently Asked Questions about Tissue Donations

While we can learn about FA from animal and cell models, there is a lot of knowledge that can only be gained from studying human tissue. For example, end-of-life tissue donations have contributed to several breakthroughs in understanding the disease in humans and knowledge documented in peer-reviewed literature:

  • An expanded understanding of how the nervous system (brain and spinal cord) changes and how therapies could potentially be delivered to the brain
  • Eye donations helped researchers, and the FA community, understand that vision loss is a primary part of FA, and now more research can be supported to help advance therapies for vision loss in FA.
  • Donated skeletal muscle has generated new insights based on observed changes in those tissues.
  • Insights into cardiomyopathy deepen the understanding of cellular changes in the disease and provide potentially new therapeutic targets.

Surgical Tissue Donations: Anyone with Friedreich’s Ataxia (FA) in the United States can make arrangements for surgical tissue donation.

End-of-Life Tissue Donations: The University of Maryland’s Brain and Tissue Bank program is open to everyone in the United States at any age; it is not limited only to people with FA. In fact, they emphasize the importance of tissue donation from healthy individuals for comparison.

Currently, the tissue donation programs are limited to the USA due to logistical and regulatory constraints. If you live outside of the USA and are interested in donating, we recommend exploring local options through medical institutions / research organizations in your country or through your nearest FA GCC site.

Surgical Tissue Donations: 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. Specifically, they are interested in obtaining extra skin and muscle tissue that would otherwise have been discarded during a planned surgery or that is currently being stored.

The surgical tissue donations are processed and stored at the Children’s Hospital of Philadelphia. The tissues are sent by request to FA researchers and institutions around the globe.

End-of-Life Tissue Donations: Upon death, a rapid tissue collection can be performed to allow researchers to collect tissues for detailed study.

The end-of-life tissue donations are processed and stored at the University of Maryland’s Brain and Tissue Bank, which is a brain and tissue repository of the NIH NeuroBioBank. The tissues are sent by request to researchers and institutions around the globe.

Please note: If someone other than an FA researcher requests FA tissue, they must clearly explain the purpose of their request. Control tissue is often used by researchers studying other diseases, and when their findings are published, we gain valuable insights as well.

No. The only tissue that is collected is excess tissue that isn’t needed for your medical care and would generally be discarded.

Pre-arrange Surgical Tissue Donations: Download this study flyer to learn how to make arrangements.

Pre-arrange End-of-Life Donations: 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 call them at (410) 706-1755 regarding your immediate situation. Also, when you email  btbdonors@som.umaryland.edu for the link to their online registration, please include this information. A staff member can be reached 24 hours a day in cases of death or imminent death emergencies.

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

For both surgical and end-of-life tissue donations, there is no cost to you/your family for the collection, shipping and storage of tissues.

FARA cannot cover medical costs associated with your surgery or funeral arrangements.

The University of Maryland Brain and Tissue Bank (UMBTB) has a 24-hour viability window. It is recommended that you pre-register and share end-of-life arrangements so their project coordinators can work on logistical arrangements. Keeping UMBTB updated on any changes to the donor’s health, i.e., if they enter hospice or death becomes imminent, makes donation more favorable.

While UMBTB will make every effort to honor your generous decision and collect your tissue donation, it cannot be guaranteed. Donation depends on many factors:

  • The availability of pathologists near the site of the deceased and or/the ability to arrange transportation to a recovery facility. UMBTB cannot guarantee that they will be able to find a pathologist or find affordable transportation within the viability window.
  • Donors can go through health changes or medical events that make them become ineligible to donate.
  • UMBTB is not notified in time for a recovery to occur within the 24-hr viability window.

Legal Next of Kin (LNOK) will be contacted by UMBTB staff if a donation is unable to be completed for any reason.

Choosing to participate in end-of-life tissue donation and going through the procedure will not delay funeral arrangements. University of Maryland Brain and Tissue Bank (UMBTB) coordinators will work with the funeral home and your family to ensure the procedure is completed in a timely manner.

The procedure will not alter the individual’s appearance in any way regardless of the funeral arrangements. There is no interference with the option to have an open casket.

*Some funeral homes may charge extra preparation fees depending on the services arranged with them. Please ask the funeral home directly if a donation will interfere with the services you plan. As stated in the above FAQ, neither FARA nor UMBTB is able to cover any additional preparation or service-related charges.

No; organ donation for medical purposes (organ transplant) does not include end-of-life tissue donation which is exclusively for research purposes. However, it is possible—but not guaranteed—to be both a brain AND organ donor.

Yes, you can. FARA staff is available to answer your questions, connect you with other families who have gone through this process, or introduce you to people with FA who have made their own arrangements. You can contact FARA at tissuedonation@curefa.org or call our office during work hours at (484) 879-6160.

For specific questions about the end-of-life tissue donation registration process, please refer to the University of Maryland Brain and Tissue Bank (UMBTB).

For specific questions about surgical tissue donations, please contact the study coordinator.

Contact FARA at  info@curefa.org with any questions

FA Researchers: Tissue Bank Access for Researchers

NIH NeuroBioBank at University of Maryland

To request tissues that have been donated to the University of Maryland Brain and Tissue Bank, all requests must be submitted to the NIH NeuroBioBank.

Click on the “Researchers” tab at the NIH NeuroBioBank website. Information is provided for tissue availability from hundreds of disorders along with demographics and RIN, a measure of RNA quality.

Additional information about the tissue request process is available at their website. If you have any questions, please contact FARA at info@curefa.org.

Surgical Tissue at the Children's Hospital of Philadelphia

To access the FA tissues that have been donated during surgical procedures, please contact the study coordinator at CHOP according to the details on this flyer.

VA Medical Center in Albany, New York

FARA has also supported an end-of-life tissue 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.