Tissue Donation Program

While we can learn about FA from animal and cells model, 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) change 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.
• Insights into cardiomyopathy have been deepened to understand the cellular changes in the diseases and provided the basis for hypotheses as to how to slow cardiac disease.

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 impacted by FA for detailed study. Previous donations of tissues from individuals with FA have provided us with a much greater understanding of FA and how the condition affects the brain, spinal cord, eyes, pancreas, muscle and heart.

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.

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

Surgical Tissue Donations: Anyone with Friedreich’s Ataxia (FA) 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 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.

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 surgical donations, tissues are anonymous and deidentified before delivery to researchers.

For end-of-life donations, the next-of-kin has the option to ensure that no identifiable information is shared.

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.

Currently, our tissue donation programs are limited to the USA due to logistical and regulatory constraints. We recommend exploring local options through medical institutions / research organizations in your country or through your nearest FA GCC site.

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.