Sam's Superheroes Foundation

@CaoimheBennett @EpilepsyInst @ResearchNetERI Thank you so much! And hopefully our paths will cross again! 🌟🌟

@SuperheroesSam @EpilepsyInst @ResearchNetERI Rachel - so sorry for missing your tweet and thank you so much. I cannot tell you how inspiring meeting you has been, and hearing Sam’s Superhero story ❤️❤️. I hope our paths cross too, and congratulations to Daisy on the nomination!

And that’s a wrap! Finished my last week as Director of Research Operations at @EpilepsyInst @ResearchNetERI. It’s been a privilege working with such a dedicated community of researchers, supporters, collaborators and people affected by epilepsy -and, of course, a wonderful team.

@IoannidouEvang Words can't express how much we appreciated having you all there. Everyone was so touched you came all the way from London to support us. Thank you for giving us all hope and for your dedication to #FindACureForFIRES

A phenomenal weekend scooting with @SuperheroesSam! There are no words to describe how much it means raising public awareness for #FIRES and reminding us that our research efforts are in the heart of the community. #findacureforFIRES #FIRES

@NCHPlayService @JustGiving Jaime has been utterly phenomenal part of Sam's big scoot team. She led team Joy Riders - for the full 3 days keeping us motivated, safe and on track. And she has raised incredible amounts of money too! We are incredibly blessed to have her as part of our scoot team 🛴🥰🌟

Help raise £50000 to fund UK research into FIRES (Febrile Infection Related .. Please #donate on @justgiving and RT justgiving.com/crowdfunding/F… Please help support this amazing lady in memory of her son Sam unfortunately due to the weather the fun day has been postponed so dig deap

It's all about the love between a boy & his dog 🐾💖 Sam's dog, Daisy, is up for a BBC Make a Difference Award in the animal category for her Therapy Dog Work. She helps children manage all their big emotions, physical & neurological disabilities, dog phobias & more #proud

@ADanielle1994 @thismorning @catdeeley What a thoughtless, flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.

Would you joke about any other life changing condition or life limiting disease? My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures they caused catastrophic, irreversible brain damage. x.com/Tammymoseley12…

@epilepsysociety @catdeeley @thismorning What a thoughtless, flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.

Seizures are no laughing matter for people with #epilepsy @catdeeley. Please do better and educated yourselves about this difficult and poorly understood condition, @thismorning 💜

@1985Deanne @catdeeley @thismorning What a thoughtless, flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.

@epilepsyaction @catdeeley What a thoughtless flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome. After 7 weeks in critical care from uncontrollable seizures, they caused catastrophic brain damage. To see your child have seizures is horrific and they can be deadly.

Just 2 months ago for Purple Day, @catdeeley you helped raise awareness about epilepsy & still end up saying something thoughtless. Your careless use of language has real consequences for people with epilepsy who already face so much stigma. This is why we need more awareness!

@Metro_Ents What a thoughtless flippent comment to make. My son died of Febrile Infection Related Epilepsy Syndrome, after 7 weeks of uncontrollable seizures, they caused catastrophic brain damage. To see your child have unrelenting seizures is horrific and they can be deadly. Sam's mum ⚡

Cat Deeley blasted for ‘making light of epilepsy’ with shocking This Morning comment trib.al/3SGhQZ9

@epilepsysociety A great idea, it's very informative

Our video shows what someone may experience during a focal aware seizure (previously called simple partial seizures). bit.ly/3IR6xsM They're sometimes called ‘auras’ because, for some people, they develop into another type of seizure. Learn more bit.ly/3f5ckfS

Thank you to everyone who supported our Sam's Superheroes stall today at Mickleover Fete! We raised £384.10 for UK children's FIRES research, with our running total standing at £1,675! Loads more challenges and fundraisers coming up, so watch out!

@BrainImagingLiv @EpilepsyInst Meeting the people (aka SUPERHEROES) last night who are trying to change and save lives was inspiring. I'm so thankful to have been invited to share Sam's story and support the FIRES researchers. I hope in the not to distant future a cure for FIRES will be found. Sam's mum 🌟⚡

The @EpilepsyInst session opens with Rachel’s story of tragically losing her son, Sam, to a rare and devastating epilepsy syndrome called FIRES, and his legacy through @SuperheroesSam. Read about the foundation’s important work here: samssuperheroes.co.uk #NationalEpilepsyWeek

Our hopes for epilepsy research #FINDACUREFORFIRES #epilepsy #EpilepsyResearch

@sk_wright It was a privilege to supporting you in your life saving research 💖 it was so interesting to learn more about your research as well 🌟⚡thank you from me and SAm 🌟

@NCHPlayService @nottmchildrens @nottmhospitals @WorldBookDayUK We loved our visit and meeting all the fabulous and brave children and young people! Thank you for letting us visit, Daisy loved all her strokes and cuddles! 💞💞🐾🐾

Today @NCHPlayService had the privilege of Daisy from @SuperheroesSam come visit us for world book day. The patients and families were able to take part in a story workshop and meet Daisy at the same time @nottmchildrens @nottmhospitals @WorldBookDayUK

@NCHPlayService @JamieLeePhilli5 @nottmchildrens @nottmhospitals Thank you so so much for coming along and supporting us Jamie-Lee. I cannot begin to express just how much this meant to me, and I know it will have done to Sam too. 🥰 Sending love and the biggest of hugs 🥰 xxxx

@NCHPlayService lead @JamieLeePhilli5 visited @SuperheroesSam event last night in memory of her son & another patient who sadly lost their lives @SuperheroesSam supports the @NCHPlayService @nottmchildrens @nottmhospitals so it was nice for us to show some support in this event

@NCHPlayService @nottmchildrens It was super lovely to meet you both! I can't begin to tell you how excited we are after our meeting.. Lots of plans in the making hopefully resulting in lots of SMILES on children's faces! It is an honour to be able to support the invaluable @NCHPlayService in some small way!

@NCHPlayService had a fantastic meeting today today with a lady called Rachel who set up Sam’s superhero’s in memory of her son who sadly passed away in 2021 Rachel wants to support us @nottmchildrens so we are looking forward to working together with some exciting fun things !!

Just posted a photo @ Mickleover instagram.com/p/CgRxyn_MWcI/…