· If you are very young and you’ve been diagnosed with ET, you can become a brain donor.
· If you are not that young and you are diagnosed with ET, you can become a brain donor.
· If your next of kin passed away and you are aware of the fact that he or she had ET, and you know that it would be in accordance with his or her and your beliefs, you can call us to donate their brain tissue.
If you have essential tremor and would like to register as a donor:
Contact us at (212) 305-8513 or tremor@columbia.edu and let us know that you, or the person you are calling for, wants to become a brain donor.
1.) We will send you an informational package with the forms to complete and instructions on how to fill them out.This will include:
· The Clinical Intake Questionnaire, consent forms, and a couple of drawing tasks.
· Instructions for making a home-made videotape demonstrating your tremor. If you are unable to create this video recording, it does not prevent you from becoming a brain donor. However, the video is a very important tool in our research as it allows not only good documentation of your tremor’s characteristics, but also allows us to correlate your clinical symptoms with future post mortem brain tissue observations.
2.) Complete and return these materials tous. Once we have reviewed them, we will send you the two remaining forms to complete and return. These include:
· The Personal Brain Donor Plan. On this form we ask you to supply the contact information for yourself, yournext-of-kin, your doctors, and your funeral home (if you already have one in mind). This provides us with a frame work to accomplish your goal of brain donation within hours of your death.
· The Statement of Intent to sign. This form is meant to help in explaining the reasons why you have made this choice to those closest to you. It is very important to share your decision with your loved ones. It is also important to communicate this to your family members and your doctors. This is to make sure that all those who need to know about your decision will be ready to make the phone call at therequired time.
You are welcome to call us at (212) 305-8513 any time to update information or change your mind.
If you are the next of kin and want to make the donation at the time of death:
You can call us within the first 48 hours after the time of death to make the donation. At the moment of your call we are going to setup a plan to have a doctor or a technician perform the harvest of the tissueand send it to us.
At the time of death, the person listed in your Brain Donor Plan (usually a spouse or child) should call the 24-hour telephone number (917) 899-2045. After they hear 3 beeps, they will enter their phone number, then press the # button, then hang up. They can expect a return call within minutes. Do not hesitate to page again. We understand that this is an anxious time. Hearing twice from your family is better than having never gotten the call. We are on-call 24 hours a day, 7 days a week, for emergencies and brain donation.
