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:
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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.
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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.
It's important to share your donation wishes
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Courtney Tobin (left), of Ontario, Canada, lost her 23-year old sister, Chelsea (right), to SUDEP in 2012. Two days beforehand, Chelsea had registered online and signed a driver’s licence organ donor card. She had also made her family aware of her decision. Despite the trauma of Chelsea's sudden passing, her family knew they had to honour her commitment and her donation brought sight to a young boy.
Shortly after Chelsea’s death, her family learned how tissue donation can aid SUDEP research. No tissue had been set aside at autopsy. Fortunately, there was some blood available and this is now helping researchers look for specific epilepsy/SUDEP markers in DNA.
“Because many doctors do not talk to their epilepsy patients about SUDEP, most people have no idea of the vital need to save that precious tissue,” says Courtney, who also lives with epilepsy.
“By raising awareness of these issues with families and caregivers of people living with epilepsy, as well as with medical practitioners and coroners, our objective is to further their understanding in these matters. The work of SUDEP Aware and similar organizations is essential towards reaching this goal.”
It’s important to register your decision to donate
29-year-old Alice Hale, of Washington, USA, who lived with epilepsy for 27 years before she died of SUDEP, was an adamant supporter of donation for both transplantation and research.
Because Alice informed others of her wishes, she saved three lives through the donation of her kidneys and liver. Two other individuals received the gift of eyesight via transplantation of her corneas.
Deborah, Alice’s mother, recalls, “though I was overwhelmed with sadness that I hadn’t been able to keep my child alive, I felt a momentary sense of joy that I could at least fulfil her wishes.”
Alice passed away in a hospital, which is why she could donate her organs. Since most SUDEP deaths occur in the home, donation is generally exclusive to tissue (such as skin, heart valves), or to epilepsy research.