With rare diseases, acquisition of actual tissue is invaluable in terms of understanding the devastating changes taking place in the brain and other tissues in the body. The donated brains and other tissues, unlike other body organs, are obtained only after death for research purposes only. This enables researchers to better understand the disease which in turn will lead to new breakthroughs and testing of novel ideas that eventually translates into a potential treatment and possible cure.

It is never too early to start the process! Communicating your desire that you are considering a brain and tissue donation when your loved one passes is very important. Letting your physicians, social workers or other care providers know that you are interested will help in the initial preparation process. Paperwork and coordination with local hospitals, physicians, pathologists, the NDRD Brain and Tissue Bank, and funeral homes can all be done in advance. At P4KR and the NDRD Program for the Study of Rare Disorders, we have coordinators who handle all of the logistics in order for your donation to occur. Most details are handled in advance and the family is informed of the process and what will happen when death occurs. It is less stressful to have paperwork in place prior to your loved one’s passing. By no means are you ever obligated to go through with your donation, even if you have gone through the process of filling out paperwork. Our highest priority is supporting families through all stages of this process.

Typically any brain and tissue retrieval needs to be obtained within 24 hours after your loved one’s passing. It is more difficult both emotionally and logistically to coordinate a donation without paperwork in place, however it is possible to be done.

The procedure for retrieval of tissues will not interfere with an open casket viewing. Therefore, traditional funeral services can be performed. If paperwork is prepared in advance, typically it is a smooth transition to have your child prepared for funeral arrangements in a timely manner. Everyone who is involved with the tissue extractions is coordinated in advance. A plan is in place that will ensure the least amount of distress to the family.

An infrastructure has been created so that when the time comes, as much stress as possible is eliminated from the family, including associated costs with tissue donations. Tissue and organ harvesting is typically done in a hospital setting. Approximate fees of up to $2000 can be incurred. Private and state insurances do no cover tissue/organ donation. At Partners For Krabbe Research we raise money to help defray the costs that are associated with the recovery of tissue samples. No financial burden will be placed on one’s family as a result to donate tissues. P4KR does not pay for any funeral expenses, only costs associated with tissue removal, transportation of tissue to the NDRD Brain and Tissue Bank in Pittsburgh, costs to investigate and house tissue samples, and other related costs.

The NDRD Brain and Tissue Bank at the University of Pittsburgh in Pittisburgh Pa., and P4KR will coordinate all tissue donations. The samples will be maintained by the Alzheimer Disease Research Center Biorepository at the University of Pittsburgh under the direction of Dr. Julia Kofler, Dr. Maria Escolar is the director of the NDRD Program for the Study of Rare Disorders. There is a review board and approval committee who will determine how samples can be obtained and used for research.

The family will be contacted with a report from the office of pathology at the University of Pittsburgh Medical Center regarding the findings on the initial review of the samples obtained. Information can be provided to the family when their loved one’s samples have been used for research.

Program for NDRD in Rare Disorders, Pittsburgh, PA: 412-692-6350 P4KR.Info@gmail.com Anne Rugari, Consultant for the Program for Neurodevelopment in Rare Diseases (NDRD) Brain and Tissue Bank. P4KR.Anne@gmail.com

Thank you for considering a donation of brain and tissue samples for research purposes. The importance of human organ and tissue donation for research is a highly emotional and difficult decision for a parent to make. For some families the decision may be very difficult to consider donating, especially given the emotional stress that they have already endured from the disease. For others, this donation may offer a sense of purpose and comfort, knowing that the quest for knowledge and medical research will carry on for Krabbe Disease. Animal research has brought scientists to find potential treatments for Krabbe Disease. However, human samples help us to better understand the pathology of the disease. With the contributions received to date, clinicians, scientists and researchers already have confirmed many theories of how Krabbe disease affects the body’s nervous systems. The investigation of human tissue samples and how the transplant has helped the central nervous system (brain), but not the peripheral nervous system disease has already been confirmed from a brain and tissue donation. Much more research and tissue samples are needed in order to continue to investigate this very challenging, devastating disease in hopes of finding a cure.

~You may donate directly on the P4KR website: DONATE LINK ~Mail a check to our Post Office Box 2313, Palm Harbor Florida 34682 ~Hold a fundraiser to support Brain and Tissue Research for Krabbe Disease ~Donations to support P4KR Brain and Tissue Research at a funeral ~Contact P4KR.Info@gmail.com