Societi’s Heart Heroes

Here are the stories of our Societi Heart Heroes who have been truly remarkable in their dedication and support for Kawasaki Disease awareness raising and fundraising for Societi. These incredibly determined individuals go above and beyond and we are so very grateful to each one of them. They inspire us and we hope they inspire you too. Get in touch if you’re planning to raise awareness or would like to hold a fundraiser and we will help where we can with materials such as posters and leaflets.​​​​​

If you’re in need of inspiration to get you going on your awareness raising or fundraising journey – there’s nothing quite like seeing what others have been up to – and the Societi Supporters below have been so determined and prolific in their support for Societi that we just had to award them the title of Societi Heart Hero!

Kevin

Kevin’s family was affected by Kawasaki Disease when his nephew was diagnosed aged just 6 months. A long-term supporter of Societi, Kevin has taken on challenge after challenge to support us and to raise awareness of Kawasaki Disease.

From cycling from Manchester to Blackpool, to hiking up Ben Nevis, Kevin’s ambitions know no bounds!  He is currently tackling a simply mammoth challenge to conquer every single one of the 214 Wainwright’s in the Lake District – with the aim to raise a massive £10,000 for Societi – just phenomenal.

Kevin’s time and support for Societi has not always been straightforward to find. He’s battled through his own health issues and demanding work commitments, but his tenacity is second to none.  We are hugely grateful to Kevin for the dedication he has shown and continues to show – always with a complete determination to get Kawasaki Disease known.

Here’s what Kevin says:

“I’ve been supporting Societi for several years now, my nephew, now 15, was diagnosed with Kawasaki Disease when he was 6 months old, however it was caught very quickly, and he suffered no lasting damage to himself. He is now playing rugby at a club level, something that back then we would have never imagined.

Since then, I have raised £2500 between myself and a friend on the Manchester to Blackpool bike ride and £1300 solo walking up Ben Nevis. I am currently taking on all 214 Wainwright peaks in the Lake District, currently my total stands at 131. It can be difficult at times due to me having diabetes and psoriatic arthritis (like rheumatoid arthritis).

Sometimes I have friends around me, but a lot are completed solo, and I’m doing all this while working a full time job. £10k is a huge sum of money for the charity, I hope that I can at least reach a 1/5 of that sum but I’d love to get the full amount or more. I hope that you can join me on my journey.”

We’ve named Kevin a Societi Heart Hero thanks to his sheer determination, terrific and consistent support over many years for Societi and an unswerving commitment to getting Kawasaki Disease known. Every Wainwright ‘selfie’ that we see from Kevin means so much!

We are truly grateful for everything Kevin has done for Societi and we’re in awe of his herculean achievements – equalled only by his immense resolve to protect children’s hearts from Kawasaki Disease – thank you Kevin!

Lisa

Lisa has been a Societi Supporter from the very beginning! She was there to offer support in the very early days, she was there to celebrate Societi becoming a registered organisation over 7 years ago and she is still very much with us today, championing our work and supporting everything we do.

Lisa’s family was affected by Kawasaki Disease when her son, Reuben, was diagnosed, aged just 2. Luckily, Reuben was treated relatively quickly and didn’t suffer any heart damage. But the turmoil of going through such a worrying and turbulent time was still very much felt by Lisa and her family. This has motivated Lisa to support Societi, raise awareness of Kawasaki Disease and help others who find themselves in the same situation as she did all that time ago.

Here’s what Lisa says about her experience of Kawasaki Disease:

“Kawasaki Disease has touched me in a way I never thought was possible. To have your child diagnosed with something that many know nothing about (including doctors) is extremely scary. To not know what is happening to your child and to trust in your doctors when they are saying “it’s nothing to worry about”… but knowing there is more to it, is hard. I’m glad I trusted my instincts and we got Reuben to A&E where he was treated relatively quickly.

To learn of what could have happened is the worst thing about it and knowing there are families going through a future of uncertainty with the most precious thing in their lives, is one of the things that has spurred me on to help spread awareness of this horrible disease. The fact that Kawasaki Disease is the leading cause of acquired heart disease in children yet many have never even heard of it is something I want to help change and so my fundraising journey with Societi has begun.

It is very hard work, especially when people just associate the name with a motorbike (!!) but my little and often approach is working, slowly. My hope is that one day everyone will have heard about it and can recognise the symptoms straightaway. Of course a world with no Kawasaki Disease in it would be even better – but we can’t work miracles x.”

Over the years, Lisa has raised so much awareness of Kawasaki Disease and a staggering amount of money for Societi Foundation. Her fundraising began with Societi branded bags of sweets, she’s held tombola’s and car boot sales, she involved Reuben’s school in a multitude of events, organised fun mile walks, has organised a ‘metal head’ sculpture to raise awareness in her local community, made regular donations, distributed Kawasaki Disease information to parents and the general public, and around our key campaign dates, she’s involved many, many local schools in our wear-red for Kawasaki Disease awareness initiative.  Oh, and much more besides!  She is truly an exceptional ambassador for Societi and for Kawasaki Disease awareness.

Lisa’s support over the years has meant so much to us and we are so pleased that she continues to stand by our side, helping in every way she can to get Kawasaki Disease known. Without Lisa, Societi would be a different organisation and we are so very grateful to her for everything she has done. A true Societi Heart Hero!

Hayley and Vikki

Hayley and Vikki have been part of Societi for as long as we can remember! Hayley first contacted us after her daughter was affected by Kawasaki Disease. Ever since, this formidable sister-duo have gone above and beyond to support our organisation in every way possible.

Hayley and Vikki helped form the Societi Active Committee. They’ve had our supporters moving, running, walking and more – and raising money for years, organising and running all kinds of Societi events, with no fewer than five Virtual runs for World Heart Day – just astonishing!

They’ve organised curry nights – a Societi first at the time… bumper bingo nights and virtual quiz events in their local communities and work places, all to raise awareness of Kawasaki Disease and funds for Societi.

Vikki said:

“When I secured my place in the Brighton marathon for 2018 I immediately knew that I wanted to use the opportunity to raise awareness of Kawasaki Disease. 

Since our family were affected by Kawasaki Disease it became apparent that not enough people knew about this condition. By proudly wearing my running vest, and then later on t-shirts, hoodies, bags, water bottles, I have been asked by so many people to explain what Kawasaki Disease is. 

My sister Hayley introduced me to Societi and I am proud to be a long-term supporter, raising funds and awareness to support the fantastic work of such a caring charity. Thank you to Societi for all of their support.” 

As well as getting others moving, these super-sisters have been super active for Societi themselves! Vikki was our first ever marathon runner in a Societi vest – a moment in time our Founder Rachael will never forget! Vikki organised the vests (and encouraged her employer to sponsor our very first batch) – she’s a trailblazer in more ways than one! She’s been busy in many running events since – even completing the Virtual London Marathon, running round the block and selling off laps to raise money with lots of friends and family joining in!

And, (in ANOTHER Societi first) her sister Hayley ran the London marathon! Hayley has also offered us such amazing support, devoting her annual work’s volunteer day to packaging and posting GP packs and more recently being guest editor of our summer newsletter. She (and her husband!) volunteered to be in our awareness film campaign to Know Kawasaki Disease – and Hayley’s children are regular contributors too – drawing posters, creating artwork and helping get Kawasaki Disease known with their friends and at school.  On top of all this, Hayley is also a regular donor to our organisation. If there’s something Hayley can think of to do that will help, she will do it! We can’t thank her enough.

Hayley said:

“Societi have been such a big part of our lives since my daughter was diagnosed age 4.  They have helped more than they will ever know, and the small bit that we do to try and give back will never repay their support and the tireless campaigning that they do to raise awareness.   Encouraging people to be active through Societi Active is an added bonus!

Getting the opportunity to run the London Marathon for Societi is still one of my proudest achievements and a day I will never forget (or repeat!).”

The support that Hayley and Vikki have given to Societi over the years really is above and beyond. We’re so lucky to have them in our corner, helping in each and every campaign we run, to get Kawasaki Disease known. Extra-special Societi Heart Heroes like Vikki and Hayley help us make the impact that we do. Without these fabulous ladies in our Societi world, we know we wouldn’t be making the strides forward that we are, in protecting children’s hearts – thank you both!

Gayle

Gayle, member of the Societi Active committee, never ceases to amaze us in her tenacity to support Societi and get Kawasaki Disease known. Gayle really does put her heart and her soul into everything she does and that goes for all she does for Societi too!

Gayle, a personal trainer by profession, has inspired so many people to get moving and raise awareness of Kawasaki Disease. She has put in so much hard work to make sure every Societi Active event has been a huge success.

Gayle became a Societi supporter after a local family were affected by Kawasaki Disease. She heard about this and offered to help raise awareness in 2020 – and she hasn’t stopped since!  After running the London marathon for Societi, Gayle went on to organise event after event in her local community – from Spinathons to huge group runs which have ‘painted the town red’ with everyone in Societi running gear…. to running an entire race (alongside Minnie!) in a Mickey Mouse costume! Gayle even scaled Mount Kilimanjaro in her Societi vest, with her team in Societi T-shirts too – all to raise awareness of Kawasaki Disease. Over time, she has raised simply thousands of pounds for Societi too!  Everyone who knows Gayle would say she has endless energy – and endless enthusiasm. We are so lucky she has directly so much of her energy and enthusiasm into Societi. We’ve achieved so much more with her support, than would have been possible without it.

Gayle said:

“After hearing how Kawasaki Disease affected a friend’s family, I soon realised how it important it is to get awareness out there. 

I love supporting Societi as it allows me to help children’s hearts by not only doing the things I love to do, but also by bringing others together and getting them active and social!

There really is no charity quite like Societi and I hope to keep supporting them as much as I can in the future. Although it is not about us receiving back, thank you for always recognising everyone’s efforts ❤️”

We are so very grateful to Gayle, and we are in awe of her energy and her resolution. It’s Societi Heart Heroes like Gayle that truly inspire us. We know she inspires everyone else around her too – to keep going and to remember that anything is possible if we are determined enough.  Thank you, Gayle for bringing so much of your limitless passion to Societi!

Alister

If there’s anyone more willing to participate in Societi projects and events than this guy… we haven’t met them yet. Alister has been a prolific supporter of Societi since 2018 and over the years he’s been involved in all manner of endeavours to help protect hearts from Kawasaki Disease.

As well as raising thousands of pounds for Societi, and generating bucket loads of awareness through a variety of physical challenges (cycling, running, swimming… you name it!) In fact – it was a long-distance running event completed by Alister and his wife Ali, fundraising for Societi, where their connection with our charity began.  Since then, Alister has offered his support, and been a champion for our work, in a huge variety of different ways.

Alister was involved in the creation of our family story films and podcasts – a simply invaluable resource for our families; and although he had to dig deep to share his experiences from those very dark days, he generously gave his time to tell his Kawasaki Disease family story to camera. He did this solely to help others going through similar experiences – standing in solidarity with everyone across our community.

Alister has donated his professional support for our charity too – and he’s a regular blood donor.  In fact – an incredible photograph of Alister donating plasma in his Societi t-shirt helped us to collaborate with NHS Blood and Transplant (NHSBT) with their campaign to raise awareness of the urgent need for plasma donors in the UK. Plasma, from blood, is used to create immunoglobulin – the precious medicine used to treat Kawasaki Disease.

Alister went further and supported us in person at our collaboration event with NHSBT. This was organised to create a conversation in Parliament, an event raising awareness of the national importance of blood and plasma donors. Alister generously gave his time to present to Members of Parliament during the session, sharing his experiences to help MPs understand the issues faced by families affected by Kawasaki Disease.

Alister said:

“Societi is such a fantastic charity with a noble purpose. The team are so lovely and bought into the mission. Always a pleasure to help where I can although the real heart heroes are the Societi team!”

There are so many different ways our supporters can help us in our aim to get Kawasaki Disease known, but we’re pretty sure that Alister has already done the majority of them! We’re in no doubt too that he will have plans for more…there really is no stopping him! He has dedicated so much of his time and energy to supporting Societi over the years and we’re excited to see how this truly extraordinary Societi Heart Hero will continue to help us protect children’s hearts, in years to come.

Heather

Devastatingly, Heather lost her son Jaime to Kawasaki Disease in 2017 when he was just six months old. We can’t begin to understand the grief and sorrow that Heather and her family face, and the deep sense of loss we know they still feel.

We mark Jaime’s birthday each year, at Heather’s request – and this is a privilege for us; to be able to play just a small part in Jaime’s memory – he will forever be a part of our community.

As time has passed, Heather’s absolute commitment to raise awareness of Kawasaki Disease has never diminished. It’s something she has been extremely passionate about – despite everything that she has been through. Heather has been determined to help us to get Kawasaki Disease known – and she has poured so much love and energy into supporting Societi, in Jaime’s name.

Over the years, Heather has done so much for our organisation. It was Heather who raised awareness and funds by taking part in our first ever Societi skydive in 2019! She has raised awareness in the national and local press, supported us in our campaigns to light up local landmarks for International Kawasaki Disease Awareness Day and supports us in our day-to-day work by being active on social media and championing our work at every opportunity.

She has raised awareness at her workplaces, championed the need for doctors to have information about Kawasaki Disease – and told her story to Take a Break, donating the fee they gave her for her story to Societi. We know that the GP surgeries and hospitals local to Heather have all the Kawasaki Disease resources they could ever need – thanks to her personal delivery of so many packs – making sure children in her neighbourhoods are protected. Most recently, Heather took part in the Glasgow Kiltwalk at the end of April, this year with the cutest companion – her dog, Gretal.

Heather said:

‘Our lives were changed forever when I lost my beautiful youngest son to Kawasaki Disease. This disease needs more recognition. It is the number one cause of heart disease in kids in the UK. Jaime was a thriving beautiful boy when this disease took him from us. I do not want other families to suffer this devastating loss. Societi are a marvellous charity in raising awareness for this insidious disease.’

Heather was also involved in helping us to create our ‘Know Kawasaki Disease’ awareness raising film released on International Kawasaki Disease awareness day 2021. Heather spoke to camera about her tragic experience of Kawasaki Disease and losing her son, remaining unbelievably strong throughout – all to protect other children who might be affected by Kawasaki Disease. Heather really is one of the strongest people we know – she simply is a Societi Heart Hero.

Hannah

We were first introduced to Hannah and her team at Ava Mayfair last year by the fabulous Mrs Hinch. Hannah generously agreed to work on a special collaboration between Ava Mayfair and Societi Foundation in what was to be a very unique first for us. 

Hannah supported Societi throughout our International Kawasaki Disease Awareness Day 2024 campaign by collaborating with us to release a charity wax melt unique to Societi Foundation.

The wonderfully smelling wax melt and associated packs were just beautiful with our very own logo featuring as a specially designed heart shaped charm on every pack of wax melt packs.

The packs sold out, raising a huge sum for Societi. Not only did our collaboration raise valuable funds but with every single parcel sold and sent out by Ava Mayfair during our collaboration contained Societi heart-protecting Kawasaki Disease information. That’s tens of thousands of people who now know Kawasaki Disease, thanks to Hannah and her team.

Hannah is keen to continue working with and supporting Societi so keep an eye out for future collaborations!

Here’s what Hannah says about our work together:

“It’s been an absolute honour to work with the Societi team on this collaboration and the awareness raised for Kawasaki Disease has been absolutely fantastic. Thank you so much to all of our followers & customers that have supported this very special collaboration. I’m proud of what we’ve achieved together & can’t wait to keep working with Societi in the future to continue raising awareness of Kawasaki Disease.”

The huge amount of funds and the truly phenomenal scale of awareness raised by Hannah and her team at Ava Mayfair has hugely boosted us in our aim to get Kawasaki Disease known. We are so thankful to Hannah for all she has done for children affected by Kawasaki Disease that we just had to nominate her to be a Societi Heart Hero.

How you can help?

​All our Societi fundraisers and awareness raisers are truly amazing!  We simply couldn’t continue our work without them.  The fundraising they do never ceases to amaze us, in its variety and scale.  We have fundraisers who run marathons, hold coffee mornings and non uniform days, sell Societi branded bags,  hold awareness events at their workplaces or schools, arrange collections at community events, nominate Societi as a charity to their church or a local business for their support. There are so many ways you can help, please let your imagination run wild! Every single donation means a great deal to us – just get in touch!