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Participating in the Florida Brain Bank

715 Douglas Ave #40 Altamonte Springs, FL 32714

The Florida Brain Bank is a state funded, autopsy research program with the goal of finding a cure for Alzheimer’s disease and other related dementias. The brain bank program originated in 1985 by the Alzheimer’s & Dementia Resource Center’s (ADRC) founder, Pat Jimison, in partnership with Dr. Gary Pearl of Orlando Regional Medical Center.  Together they launched a brain donation research program that went on to inspire the State of Florida to expand the program through the state’s Alzheimer’s Disease Initiative (ADI).

Mt. Sinai, in Miami is the primary research center for the State of Florida Brain Bank. Through ADRC’s partnership with Mount Sinai Medical Center, we have become the major contributor to the Florida Brain Bank program. We are one of only two program entry points to the program which covers the entire state. ADRC’s autopsy coordination and facilitation of brain donations encompasses 21 central Florida counties. The remaining counties are covered by Mt. Sinai.

Paired with ADRC’s support and one-on-one relationship with the caregiver and study participant, the Brain Bank program helps provide hope for the family and the future. Participation in the Brain Bank Research program provides a comprehensive written neuropathology report to the family that will explain in detail the diagnoses that were present in the participating family member.  The comprehensive neuropathology report serves as a valuable tool for the family, and for the physicians who were working with the participant.  Working with ADRC and the Brain Bank better prepares the family of the participant for the future and encourages them to understand the role lifestyle choice may have in reducing the potential risks for developing Alzheimer’s disease themselves. Knowing that their loved one has made a significant contribution to the body of research seeking a cure for Alzheimer’s disease helps to bring a sense of purpose to the illness and provide closure during the difficult time of loss.  The family can find comfort in knowing that the most precious gift given by their loved one has gone on to help countless others.

Currently, a definitive diagnosis of Alzheimer’s disease can only be confirmed with 100% accuracy through an autopsy. It is important to note that the post-mortem examination of the brain will not determine the cause of death, but solely the diagnosis of the type of dementia, or dementias that were present.

Registration takes some time (plan on 6-8 weeks). All participants must be registered prior to time of death and must reside in the state of Florida at time of enrollment and at the time of death. There is no charge for participation in the study.

Minimum criteria for enrollment requires an initial diagnosis of Alzheimer’s Disease, or any other age-related dementia, that has been in place for a minimum of 12 months. Additionally, a complete neuropsychological evaluation, inclusive of brain imaging, must have been done. The evaluation and initial diagnosis must have been made by a neurologist, neuropsychiatrist, neuropsychiatrist, or medical director of an ADI-funded memory disorder clinic. A local funeral home that will be responsible for transportation must be selected prior to enrollment.

To learn more about the program and how to register, contact Edith Gendron at 407-436-7752, Chief of Operations for ADRC.

This article was written by Edith Gendron, Chief of Operations for the Alzheimer’s and Dementia Resource Center. She can be reached at the number above.

 

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Betty Hoffman  

Phone (407) 949-6730