Our support of the NICE guidelines for epilepsy

We are proud to inform that the Peter Doody Foundation are not only registered stakeholders and a supporting organisation of the National Institute for Health and Care Excellence (NICE) guidance for Epilepsies in children, young people and adults but also submitted comments at consultation.

Please click on the link below to find out more information and to also see the Consultation summary report (20th December 2023) in the History tab. The consultation comments table begins on page 21 and includes our individual charity comments along with the other named charities below.

https://www.nice.org.uk/guidance/qs211

A list of organisations supporting the NICE guidance, with the Peter Doody Foundation highlighted.

PETER’S 21K PURPLE WALK

Hi there!

Thank you for your interest in our fourth ever purple walk!

Each year since Peter passed we have committed to walking 21 kilometers representing the 21 epilepsy related deaths each week in the UK.

This event is a great opportunity to get together to chat, laugh, meet new people, get out into mother nature, improve physical and mental well being and have fun.

Most importantly it is a chance to raise much needed awareness around epilepsy and SUDEP. It would also be greatly appreciated if anyone would like to raise sponsorship funds for the Peter Doody Foundation or simply donate direct to our just giving page below (or use our donate tab). If you would like a paper sponsorship form posting/emailing, please get in touch.

https://www.justgiving.com/crowdfunding/andre-doody?utm_term=yVwMRZ6Kx

All donations go directly to improving epilepsy care which significantly lacks funding compared with other neurological and long term health conditions.

We will be meeting by the steps at Haworth Church (top of the cobbles), departing at 9am, returning back from Hebden Bridge by bus for well deserved refreshments. This is a stunning landscape route across the moors of Bronte land, through woods and alongside streams.

Please drop us a line by text, email, messenger if you can to give us ideas of numbers joining us.

We really look forward to seeing you there and P.S. It also happens to be our beautiful son Peter’s birthday.

So get your purple on, have fun, make a difference!

Love

Joanne, Andrew, Peter and Harry

Our patron Matt Crooks on living with epilepsy

In 2021 we welcomed professional football player Matt Crooks as our patron.

We first met Matt in September 2021 where he shared with us his journey as someone living with epilepsy and we were able to share with him about Peter and the Peter Doody Foundation.

Football player Matt Crooks with Joanne and Andrew, Peter's parents

Then in October we had a whirlwind of a day meeting with Matt again at Middlesbrough football club training ground for lots of media coverage and to present Matt with his very own Peter Doody Foundation logo sports jacket.

We are beyond thrilled to have Matt on board as an ambassador reiterating our message in normalising epilepsy.

Please take a look at the links below to find out more about Matt and the foundation.

Middlesbrough footballer Matt Crooks shares his experience of living with epilepsy (itv.com)

Boro midfielder Matt Crooks spoke to Mark Drury about epilepsy and the season so far (bbc.com)

Matt Crooks on living with epilepsy, being unconscious for two hours and he wants to try to help save lives (thenorthernecho.co.uk)

Middlesbrough star Matt Crooks on life as a footballer with epilepsy (gazettelive.co.uk)

CROOK’S DREAM Matt Crooks dreams of becoming second epileptic player ever in Premier League but insists ‘I don’t let it define me’ (thesun.co.uk)

Update

Thank you for bearing with us while we have been offline working on (amongst other things), our Stop Sudep Silence campaign.

Regrettably while we continue to work hard behind the scenes to promote the campaign we are still unable to process alarm and monitor applications at this time.

Going offline

On the morning of the 3rd of May 2019 our lives irrevocably changed when we found our son dead in his bed due to SUDEP (Sudden Unexpected Death in Epilepsy).

Shortly afterwards we set up the Foundation with the aim to support other young adults living with epilepsy as well as their family, friends and carers and to raise awareness not only of SUDEP but of the many obstacles and challenges that those living with epilepsy face on a day to day basis and those who care for them also face.

We are proud that to date we have supported many families and individuals with the provision of 30 seizure detection devices alerting loved ones when their child or partner are having potentially life threatening seizures to enable them to call for immediate emergency support. Something Andrew, Harry and I were never given the opportunity to do to safeguard our beloved son and brother Peter.

We have worked with Government both locally and nationally to assist with the improvement of epilepsy care and services with the greatest hope that one day epilepsy as a neurological condition is given parity in terms of research funding and service provision alongside other Neurological conditions.

There are still an estimated 21 epilepsy related deaths every week in the UK, nearly half of which are SUDEP, potentially avoidable deaths with under 20% of clinicians openly discussing SUDEP and epilepsy risks with patients.

We are approaching what will be three years since the charity was founded with the ensuing successful official registration with the Charity Commission in December 2019. During this time myself as Co-founder and Chair have committed myself daily to our foundational aims and goals but as Pete’s mum I now feel I need time away from the day to day running of the charity to grieve.  Andrew, myself and Peter’s brother Harry are also nearing the long awaited Inquest into Peter’s death which has been and still is an extremely difficult and painful process.

At our trustees meeting yesterday we took the decision, along with guidance from the Charity Commission to take The Peter Doody Foundation temporarily ‘off line’ as of the 1st April, not only for the personal reasons referred to above but to re structure and focus on the future of the charity. As of today’s date we will not be undertaking any further alarm applications to enable us to complete our present applications in time for the off line date.

We are also considering our longer term goals in relation to epilepsy research projects particularly relating to SUDEP, its causes and to help prevent deaths. We therefore encourage and ask our dear supporters to continue fundraising for the Peter Doody Foundation, in Peter’s name and as part of his legacy and be assured that although off line the continued funding and donations will be directed specifically to projects that align with our aims and objectives and not disseminated in ways that do not.

As a family, alongside our trustees and friends we will also hopefully be looking to continue to personally fundraise mainly with ‘DoodFest’ and our 21k Purple walk and look forward to seeing you then and there.

In life Peter was so courageous in living day to day with his epilepsy. He was 17 just starting out on his exciting independent journey, moving to Leeds and starting his Degree in music production. Unless you have this cruel condition yourself we can never truly understand the strength it takes to push past seizure after seizure. As his mum, I could only imagine but am forever proud of his strength and what he went on to achieve and of the kind, caring man he became.

With much love and gratitude

Joanne

ALARMS AND MONITORS

As of todays date the 15th February 2022, we have provided 29 people with a seizure detection device. That’s just over one device per month on average since we set up the charity in December 2019!

A huge thank you to all our fundraisers for helping to make this possible.

Joanne Doody Co Founder and Chair

VOLUNTEER OPPORTUNITIES

Hi,

We are looking for two passionate, dynamic, creative people to join us. Could you be our helping hand, shining light………

We are a small upcoming charity that support adults living with epilepsy alongside their family friends and carers.

Epilepsy is one of the most common neurological conditions in the world and there are over 600,000 people in the UK with a known diagnosis of epilepsy. That’s about 1 in 103 people. In every week over 600 people are given an epilepsy diagnosis; that’s 87 each and every day. Shockingly, there are 21 epilepsy-related deaths every week in the UK.

We provide a holistic approach in being there for our amazing and courageous young and older adults through provision of monitor equipment and well-being support. We aim to achieve this by raising awareness, providing support and reducing stigma.

We are based in the Keighley area of Bradford but offer support throughout the UK.

We are presently looking to fill two roles:

  • A social media volunteer who could help with the following:

Preparing a social media strategy and implementing it, regular posts on Facebook, Twitter and Instagram, increasing the followers’ numbers and engagement with the charity. Our aim is to raise awareness and also much needed donations. So if you have social media/digital marketing experience, please apply!

  • Volunteer Secretary To The Board of Trustees

Your role as Secretary to the Board of Trustees will be important in assisting the smooth running of the PDF Board of Trustees to lead strategy and oversight. As Secretary to the Board of Trustees, you will lead the administration for the Board, including preparing and circulating agendas and minutes of Board Meetings, Sub Committees, and the Annual General Meeting. The Secretary also provides advice and support on the governance within the organisation.

We are looking for people who can bring energy, passion and drive to help us achieve our mission and ensure the charity is effectively governed and managed.

We particularly encourage applications from people with disabilities and people from ethnic-minority groups to align with our goal of ensuring representation from the communities and people that we serve. An understanding of people living with epilepsy is desirable but not essential.

If you are interested in applying for these volunteer positions or have any further questions about the role please email info@peterdoodyfoundation.org for an application form or contact Joanne on 078865 629626 for an informal chat.

Closing date: 31st January 2022

Come and join us at our very first Classical Masquerade Ball!

We have great pleasure in inviting you to our first annual masked classical
ball at the Holiday Inn, Brighouse on Saturday the 21st of March, an event focused on unmasking the limits to epilepsy care.

Masquerade ball

The Foundation supports young adults living with epilepsy including
their families, friends and carers. There are three epilepsy related deaths
a day significantly within the age range we support. Our aims include
raising awareness of Sudden Unexpected Death in Epilepsy (SUDEP)
and to save lives.

Tickets are available individually (£45) or the option to book a table of
ten people at a discounted price (£405). Ticket price includes:

  • Prosecco reception
  • Three course meal including wine
  • Live orchestral music
  • Auction
  • Prize for best Masque
  • Raffle

With your support we hope to continue in offering much needed
emotional and practical support.

Announcing PDF Week! 3rd to 10th July

Welcome to our very first PDF Week!

Celebrating Peter’s birthday week while raising awareness and hopefully much needed funds to support our amazing young adults living with epilepsy and their family, friends and carers.

From all of us here at the Peter Doody Foundation we really hope you join us in some of our fun, exciting and informative daily events if not all!

Thank you once more for all your support 💜

Saturday 3rd July

Sunday 4th July

Click here to join the event!

Monday 5th July

https://www.youtube.com/watch?v=Q4C-R52Ffy4
https://www.youtube.com/watch?v=olArThAgUd8
https://www.youtube.com/watch?v=tA-Bikjbka4

Click here to join the event!

Tuesday 6th July

Wednesday 7th July

You can click here to reserve your place (please make sure you provide your email address so we can send you the Zoom link).

Thursday 8th July

Friday 9th July

Saturday 24th July