20/02/2026
Dear PDF Community,
It is with a very heavy and tender heart that I share the decision to close the Peter Doody Foundation. Even writing these words, I feel something pulling deeply at my heart.
As you know, the charity was founded soon after the sudden and devastating loss of my son, Peter, to SUDEP in May 2019. The grief of losing Peter so unexpectedly is something I struggle to put into words, and perhaps always will. What makes his loss even more painful is that neither Peter, nor my husband and I as his parents, were ever made aware of Sudden Unexpected Death in Epilepsy or that it was a risk associated with his diagnosis. We were never given the opportunity to understand the options that might have helped safeguard him.
It was this absence of vital information that compelled us to act. We established the Foundation to support young adults living with epilepsy, along with their families, friends and carers and, so importantly, to help break the silence around SUDEP.
Because of your extraordinary kindness, generosity and encouragement, we have been able to provide seizure detection devices and sleep-safe pillows to many people living with epilepsy. Together, we also created the Stop SUDEP Silence campaign and film. My heartfelt hope is that the film will continue to inform, educate and protect lives in the years ahead. It stands as Peter’s lasting legacy, alongside Chris’s, Jon’s, Erin’s, Helen’s and James’s, and in honour of SUDEP Angels everywhere.
As we close this chapter, I want you to know that any remaining funds will be donated to Epilepsy Research Institute directed specifically toward their Mortality, Morbidity and Risk research theme, arguably one of the most vital areas of their work. It brings me comfort to know that these funds will continue to support the important work being done to better understand and prevent epilepsy-related deaths, and to protect others from the devastation so many families have faced.
I have always thought of you as extended family and have felt your compassion, strength and unwavering support at every step. You are, and always will be, part of Team PDF.
Over these past years, I have often said that people living with epilepsy are among the strongest individuals I know even though I understand that strength is not something you ever asked to have to carry. I continue now to quietly advocate for you to take up space in your clinical appointments, to ask questions, and to expect more. You deserve the very best care. You deserve full and open conversations about your diagnosis. You deserve to be informed, supported and treated with the seriousness that epilepsy, a complex neurological condition, demands.
Please continue to claim what is rightfully yours: complete, compassionate and optimal epilepsy care, both clinically and in society.
With my deepest love and gratitude,
Joanne 💜✨(Peter’s mum)
