The Peter Doody Foundation

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A truly heartfelt thank you for all your kind messages. Every single one has meant so much. Sending love to you all 🙏🏻💜
23/02/2026

A truly heartfelt thank you for all your kind messages. Every single one has meant so much. Sending love to you all 🙏🏻💜

Dear PDF Community,It is with a very heavy and tender heart that I share the decision to close the Peter Doody Foundatio...
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)

We are so grateful to have recently received this thoughtful message from a bereaved mum who sadly lost her beautiful da...
14/01/2026

We are so grateful to have recently received this thoughtful message from a bereaved mum who sadly lost her beautiful daughter Nicola to SUDEP. We are so desperately sorry for your incomprehensible loss 💔💜

“I just want to say I have just watched your video Stop SUDEP Silence.
I thought it was amazing. Congratulations on its production.
My daughter Nicola died from SUDEP in May 2025 aged 41yrs.
She was diagnosed in her early twenties with night time seizures. Like Peter she was never told about SUDEP.
The first time we heard of SUDEP was after she died.
She leaves behind her husband and little daughter 10yrs,me her mum and her sister.
We are totally devastated and keep asking ourselves how did we not know about SUDEP.
Your video meant so much as I can relate to the experience of yourselves and the other parents who took part.
Reassuring words too from the health professionals involved.
Thank you for making it.”

We are so grateful to have recently received this thoughtful message from a bereaved mum who sadly lost her beautiful da...
14/01/2026

We are so grateful to have recently received this thoughtful message from a bereaved mum who sadly lost her beautiful daughter Nicola to SUDEP. We are so desperately sorry for your incomprehensible loss 💔💜

"I just want to say I have just watched your video Stop SUDEP Silence.
I thought it was amazing. Congratulations on its production.
My daughter Nicola died from SUDEP in May 2025 aged 41yrs.
She was diagnosed in her early twenties with night time seizures. Like Peter she was never told about SUDEP.
The first time we heard of SUDEP was after she died.
She leaves behind her husband and little daughter 10yrs,me her mum and her sister.
We are totally devastated and keep asking ourselves how did we not know about SUDEP.
Your video meant so much as I can relate to the experience of yourselves and the other parents who took part.
Reassuring words too from the health professionals involved.
Thank you for making it."

Yesterday, on a cold winter’s morning, Lewis set out on his 13th of 21 Marathons for us. His first run in over three wee...
30/12/2025

Yesterday, on a cold winter’s morning, Lewis set out on his 13th of 21 Marathons for us. His first run in over three weeks due to illness. Of course he smashed it! 🙌 🤗

What a legend you are Lewis 🏃🏻‍♂️🏅

If you would like to support Lewis in his challenge to raise funds for the Peter Doody Foundation please donate here. Thank you so much 🙏🏻 💜

https://www.justgiving.com/page/lewis-hawkes-1731014264848

This year will be our seventh Christmas without our beautiful son Peter. 💔To all Epilepsy clinicians who continue to cho...
08/12/2025

This year will be our seventh Christmas without our beautiful son Peter. 💔

To all Epilepsy clinicians who continue to choose not to inform of SUDEP, this is the reality of not being informed.

Please spare a thought for all those families who will have an empty chair around their table this Christmas.

How many of these lives could have been saved if only open and honest conversations had been had. 💔💔💔💔💔💔

Today marks our six year anniversary 💜We received charity registration status on the 2nd of December 2019 to support you...
02/12/2025

Today marks our six year anniversary 💜

We received charity registration status on the 2nd of December 2019 to support young adults living with epilepsy including friends, family and carers.

As Co-founder and Chair of the Peter Doody Foundation I reflect back over these past six years, to what we have achieved, learned and where we have hopefully helped the epilepsy community in some way. In the earlier years being able to provide Seizure Detection Devices but mostly being educators and strong advocates to stop the SUDEP Silence. A tragic silence that befell our family and that of too many others.

A silence which if only had been broken, where open honest conversations had been had between the health care professionals and Peter, he could still be here with us today.

In loving memory of you Pete, (we miss you desperately) and all our SUDEP Angels.
💜

Here’s what our wonderful Lewis had to share about his 12th out of 21 marathons he is running for team PDF! “Larnaka Mar...
19/11/2025

Here’s what our wonderful Lewis had to share about his 12th out of 21 marathons he is running for team PDF!

“Larnaka Marathon 12-21 🏃 3:15:42⏱️
Larnaka was a great marathon, fantastic route, amazing atmosphere and unreal weather! 7am start so I thought it would have been a cooler start but nice 19 degrees before we even started made for a nice challenging day but going with no time goal made it such an enjoyable experience running past the promenade to the Salt Lakes and back was a blast! Finishing 75th out of over 1000 people was a great feeling! Now onto December to continue the challenge!”

Heartfelt thank you yet again Lewis. The donations you raise will help so much in supporting young adults living with epilepsy 🙏🏻💜

https://www.justgiving.com/page/lewis-hawkes-1731014264848

We are pleased to be working with Dr. Felix Chan and colleagues at Birmingham University in shaping their ESPER study.Fo...
05/11/2025

We are pleased to be working with Dr. Felix Chan and colleagues at Birmingham University in shaping their ESPER study.

For this study, they want to hear from adults affected or unaffected by epilepsy. In defining people affected by epilepsy, they aim broad - including adult living with epilepsy, adult caregivers of people with epilepsy, adult bereaved of loss of people with epilepsy, adult supporting people with epilepsy, etc. So, if you know of anyone who are part of the epilepsy community, they would love to hear from you one way or another!

If you could support this important study and would like to participate please scan the QR code or fill in the registration form here to register your interest: Participant Interest Form for ESPER Study – Fill out form.https://forms.office.com/Pages/ResponsePage.aspx?id=z8oksN7eQUKhXDyX1VPp85UDx6FzrURFuz-prwyEdalUNVdSUkIwWlIxMDVHODZKWVIwTzVBUEZWRi4u

As the seasons change and we transition into Autumn, we want to hear from you of your transition experience from paediat...
28/10/2025

As the seasons change and we transition into Autumn, we want to hear from you of your transition experience from paediatric to adult epilepsy care.

We would value sharing your individual stories and where you would wish to see change. Your voice matters so much to us here at the PDF.

Please contact Jo at info@peterdoodyfoundation with your experiences or leave a comment here. 💜

Sharing Eloise’s story who suffered paralysis and lost consciousness during a recent series of seizures.By reading her s...
23/10/2025

Sharing Eloise’s story who suffered paralysis and lost consciousness during a recent series of seizures.

By reading her story (below) we can learn just a part of what people living with epilepsy have to face. A condition that affects approximately 65 million people worldwide.

We are so grateful to Eloise for sharing invaluable information on what to do when you see someone having a seizure. Information that could save a life.

You can also learn about how to support someone having a seizure by visiting our First Aid page on the link below.
https://peterdoodyfoundation.org/first-aid
💜

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Brighouse

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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