Organ/Tissue Donation 4 SUDEP
April is #BeADonor month in Ontario and national #DonateLifeMonth in the USA. The 21st to 27th April is designated National Organ & Tissue Donation Awareness Week in Canada (#NOTDAW).
Act now and help save lives
Organ and tissue donation for transplantation or towards disease research can help save, or change, someone's life. Join us, and other families impacted by epilepsy, in bringing awareness to the urgent need for organ and tissue donations for transplantation and for vital research towards the prevention of epilepsy-related death.
There are just two easy, important steps:
REGISTER as a donor, to record your decision.
Please note: regular registration as an organ and tissue donor relates to donation for transplantation use only, not research. See below for options available for registering as a donor to epilepsy/SUDEP research too.
TELL YOUR FAMILY, or a legal representative, about your wishes to donate.
This is particularly important if you want to donate to epilepsy research as there is no automatic notification or standard practice to check with research registries. Your family/legal representative will need to immediately inform the coroner/pathologist, in order to have organs/tissues set aside for timely transfer to the researchers.
How to register as an organ/tissue donor
1 organ donor can save up to 8 lives.
1 tissue donor can improve up to 75 lives.
Organ and tissue donor registration is the only secure and guaranteed way to make your decision to donate organs/tissues for transplantation known. It is important to officially register your decision with your local organ procurement organization (OPO). In most cases this can be done online, with a quick and easy sign-up.
To find your local OPO, its registration requirements (such as age limit or need for a personal health number) and answers to frequently asked questions, use the following links for Canada and the USA.
Registration in Ontario, Canada, provides a second option where you are able to consent to donation towards research as well. Bear in mind, this refers to transplantation research only and not epilepsy research.
Donating to epilepsy/SUDEP research
In the US, the North American SUDEP Registry (NASR) collects whole brains and partial tissue (heart, liver) towards SUDEP study. To register as a donor and/or living control, or to obtain more information, contact Chloe Verducci (by email or tel: 1-646-558-0898). Whether consent has been registered or not, families bereaved by epilepsy are encouraged to report the loss of their loved one to a possible SUDEP as soon as possible, by calling the NASR (tel: 1-855-432-8555), to arrange the brain/tissue donation to research.
Brain, tissue and blood samples are also sought by the "Stop SUDEP" Research Program at Baylor College of Medicine in Houston, Texas. SUDEP researchers there can be contacted on 1-713-798-0980.
In the UK, there is The Brain and Tissue Bank, a collaborative project between the Epilepsy Society and University College London. To donate your brain and other tissue samples you can join their Donor Register by emailing or calling them (on tel: 020 3448 4009). They will send you further information and the forms for you to complete.
You can also register separately to donate other organs through donation schemes such as the NHS Organ Donor Register. Remember, it is extremely important to keep your family informed of your donation decisions and of the different schemes you have joined.
Start the conversation today
Talk with your family and let them know your organ and tissue donation wishes.
THANK YOU for your support and for helping to raise awareness of Organ/Tissue Donation 4 SUDEP 💜.
If you have any questions, please contact us.