This program is only available in the US.
NAF’s Brain Donation program helps people become future brain donors. Donating tissue for medical research is an important and deeply personal decision. Proper planning can help ensure that wishes are accounted for and honored at the time of your or a loved one’s passing. Thank you for considering this important legacy gift!
Completing a simple 3-step process will allow you or your loved one to help scientists study Ataxia.
Many feel powerless when they are first diagnosed with Ataxia. Brain donation gives the donor and family the power to provide researchers knowledge to fight back against the disease. The examination of diseased brain tissue by a trained researcher remains the gold standard to gain a better understanding of the disease. Brain research benefits all those who are diagnosed with Ataxia making brain donation an ideal way to achieve a positive outcome despite a difficult situation. Brain donation has the capacity to help find treatments and a cure!
As soon as you make the decision to provide Ataxia scientists with this generous gift is when the planning begins. Preparation will ensure that your family has a smooth transition at the time of your passing. For additional information on tissue donation contact NAF’s Research Services Associate, Mary Peterson at email@example.com or call 763-553-0020. Call 1-877-GoAtaxia (1-877-462-8294) if death appears imminent or has already occurred. Otherwise, follow the steps below to plan your brain donation.
Our Pre-Plan Donor Information Form (links to PDF) collects basic information about you such as contact information, your diagnosis, your neurologist, and a secondary contact. It should only take 5-10 minutes to complete and can be submitted by email or mail. Email the form to NAF’s Research Services Associate, Mary Peterson at firstname.lastname@example.org or send it to us at PO Box 27986, Golden Valley, MN 55427.
Your family and/or friends will be an important part of making sure that your donation happens. Discuss your decision with them and make sure that they know their role in following through on your wishes. Timeliness will be important after your passing. It is critical that they know when and how to contact us.
When death is known to be imminent or has occurred, rapid recovery is important. Your secondary contact should notify NAF by calling 1-877-GoAtaxia (1-877-462-8294). We will coordinate with the hospital or care facility and the funeral home to arrange transport and removal.
Does the donor family incur any expense for the brain donation?
No. There is no financial cost to the family for the brain tissue donation. The donor family is responsible for regular funeral/mortuary or cremation expenses, or an official autopsy, if requested, to determine cause of death.
Is the body transported to the NAF office?
No. Recovery of tissue is performed at your local hospital, funeral home, or other designated institute. The brain tissue is then shipped to NAF’s academic partner’s laboratory.
When does NAF need to be notified of the death?
Timely recovery is a very important issue. An arrangement will be made with a pathologist to facilitate the recovery, ideally within 6 hours, but no longer than 24 hours after death. Tissue donation does not disrupt the timing and viewing for most traditional remembrance services and still allows for open casket if so desired.
What happens to the body after the donation is made?
The body will be delivered to the funeral home or wherever the family chooses.
What happens to the donated tissue?
The tissue will be processed and stored in a scientific lab. Notification of the availability of tissue for research will be sent to approved Ataxia researchers. Your gift may benefit dozens of different Ataxia research studies. Your identity and your family’s identity will remain anonymous to the researchers.
Is there printable information about the brain donation program?
Absolutely. Below are printable PDF’s of a fact sheet about the brain donation program, the pre-plan information form, and a checklist to help guide you through the sign up process.
Hearing about the thoughts and experiences of others might help you decide if enrolling in the brain donation program is the right choice for you. Below are comments from individuals with donation plans in place and family members whose loved ones were donors in the past.
NAF and the University of Florida’s Center for NeuroGenetics are working together to maintain a repository of brain and spinal cord tissue from Spinocerebellar Ataxia (SCA) donors. This tissue is available to SCA researchers to help advance our understanding of these diseases. To learn what is available and how to request tissue, download our instruction sheet.