The decision to donate a brain to science upon death is a deeply personal one. We are happy to discuss this program with you and to answer all of your questions so that you may consider this option. The CNG conducts research on brain tissue from patients with Myotonic Dystrophy and Ataxia. Individuals or families can contact the CNG research coordinator directly, and we are partnered with the National Ataxia Foundation to receive brain tissue from participants with different forms of Ataxia.
Preplanning is the most important step an individual who wants to donate their brain to science can take, and we are here to help you set these plans in motion.
Become a Donor
Enrolling into the brain bank program is easy to do and does not take an abundance of time. Simply follow these steps:
- Contact the study coordinator, Deborah Morrison, either through email dgmorrison@ufl.edu, or by phone at (352) 273-5189. She will discuss the program with you and your family and answer all of your questions. You will be given as much time as you need to consider this program and to discuss it with your family before making this important decision.
- If you decide that brain donation is right for you, some documents will need to be explained and completed. The necessary documents can be sent to you via email or through regular mail and an appointment will be made to review, complete, and sign them should you decide to participate. Ideally, the donor will sign these documents; otherwise, a next-of-kin is able to sign as a personal representative of the donor.
- If you have any preplans in place, such as a funeral home or crematorium location or name(s) and contact information of those who are responsible for seeing that your final wishes are carried out, we will collect that information at this time.
- After all forms are completed and received by UF, you and your family can be at ease knowing you have completed everything necessary for brain donation when the time comes. You will be provided with instructions on how your family or representative should contact us as soon as possible after death occurs. You will be supplied with instructions on doing this.
- Sometimes a funeral home or the person that is removing the brain will require an additional form be signed prior to this procedure. Should this be necessary, the coordinator will provide the form and instruct your representative as to where and how to return it. She will assist in navigating any additional steps required for completing the brain donation.
- At any point if you wish to stop the process or do not want your brain used for research, a simple phone call is all that it takes and there are no questions asked. Your comfort and peace of mind with the donation process is our top priority.
Eligibility
We are collecting tissues from individuals with:
- Spinocerebellar ataxia (SCA), amyotrophic lateral sclerosis (ALS), myotonic dystrophy (DM), or other genetic neurological disorders.
- Individuals without genetic neurological disorders
Frequently Asked Questions
Looking to learn more about the CNG's brain donation program? If you don't find what you're looking for in the link below, please contact Deborah Morrison (info above).
