Today is our birthday!!

Today is our birthday.

Not mine.

But OURS. Societi, The UK Foundation for Kawasaki Disease is 7 today! Today is the 7th anniversary of our registration as a charity. A very special day indeed.

So where did we begin?

A wee while before then, I can tell you.

In 2009, my gorgeous girl had Kawasaki Disease. She was just a tot, and so poorly. And despite an immediate diagnosis by our fabulous GP (Vicki), we had no diagnosis for 3 more months by the hospital. A story so many of you can relate to.

So, the leading cause of acquired heart disease in children “got us” as a family – and from that point it dominated our world.

After hospital and panic, there was anger and upset. There was disbelief. And frustration. And then a moment of resolve.

What can I do to change this for others who face this too?

That process took some time, until 2015 in fact. When I resigned my job as a Government Agency Director and said to my boss (Alex) – I’m off to start a charity for Kawasaki Disease. He said…(you guessed)… Kawa-what?!

And after some negotiation, about 3 months (😍) he finally accepted I was going to do this.

And so Societi began.

I gave myself a year. I’d never set up a charity. What would it entail? Would I achieve what I felt I should? Would people put their shoulder to the wheel with me?  Who would get involved? Could we wait for funding…? No. We’d invest ourselves. We’d meet all the costs ourselves. Me and my husband just knew we had to. And so we did. No asks of anyone but us – and we got on.

Along the way, there were so many milestones. So many special moments – and so many simply incredible people. Too many to mention. But here’s a few.

One of the first was Rob. The inimitable Prof Tulloh. My daughter’s cardiologist and TOP expert in the U.K. in Kawasaki Disease. He took no recruiting what-so-ever. I shared my plan and he said “Oh, Rachael, I’ve been waiting 25 years for someone to come along and do this. I’m with you”.

I remember then, planning our logo with designer, David, at O Street. His beautiful work has adorned every single item of our output since, shaping our identity. I’m indebted to his generosity and creativity in equal measure.

Registering as a charity was tough. The Charity Commission don’t make life easy. We had days and weeks to respond to their asks. They then took months each time to consider our submission. A slow and arduous process which I’d have been less able to contend with, if it hadn’t been for Claire. By my side from the very start, and still today, Claire makes the impossible-for-Rachael possible. Everyday. And that’s been central to the success of Societi.

I remember opening the Charity Commission email – saying, matter of fact, yep – you’re a registered charity… and collapsing to my knees, in tears. Who knew it meant so much? Well – I surely did. And a few special people around me – my husband, Claire and some of our very early supporters – including the irreplaceable and much missed Andy Page, just knew. This was such a key moment.

From then, we flew. Hard yards and much money invested at the start meant next steps were a little easier. We grew our reach, we started to develop resources and our strong brand helped us grow our presence and identity.

Many mega milestones have followed. I have to mention Vikki – who ran our first marathon – Brighton – in Societi gear. That’s right up there for me. I fell to my knees, for a second time when her gorgeous sister and super-supporter Hayley sent me pics of Vikki crossing the finish line. How could someone do so much…. For us. For love. For all our children. I was in awe.

So many magical moments have followed – with people making exceptional gestures. I remember tears reading an email from Lisa, with one of the largest donations we’d received in the early days. Lisa and her family are still extraordinary supporters today. Every step of the way. Incredible.

And launching our first ever awareness animation – at Sky HQ – oh my!!! Thanks to fabulous Neeta who contributed so much, in so many ways, in those early days.

Our first ever “radical” fundraiser was Carol – still by our side today – a head shave! This, from a lady with the most luscious long locks you could imagine. She raised a massive amount of awareness and presented a huge donation. Hallmarks from the support of her family over many years.

And for sporting achievements – I have to mention Kevin. Who made a mega marathon bike ride in utterly-expiring heat from Manchester to Blackpool… and today is climbing every Wainwright for us – all in the name of protecting tiny hearts. We have the most exceptional supporters. I am in no doubt….

Along the way, many (many!) incredible doctors have stepped alongside us – generously donating their time and expertise to our cause.

We’ve trained thousands – with their support, we’ve shaped national policy. We’ve created expectation in service standards and we’ve helped educate parents facing this torrid illness, so they can help themselves and be supported, as they journey through the often dark days of Kawasaki Disease.

We’ve catalysed a multi-million Euro Europe-wide clinical trial, supported families with information and resources like never before and we’ve got Kawasaki Disease as a talking point in the UK parliament.

We’ve built relationships with almost every UK children’s hospital, sharing Kawasaki Disease information and expertise – thanks to tenacious support from the Randal Foundation. And we’ve delivered utterly extraordinary national awareness campaigns, thanks to unquantifiable support from Clear Channel. Simply amazing.

Fast forward, and it’s 2023 – and the beautiful Mrs Hinch and family come on board as exceptional ambassadors to our cause, after sadly facing Kawasaki Disease themselves. Our reach grows and grows with their immense influence – and ever-more people get to know this sinister disease, protecting countless tiny hearts.

There’s so much more to our Societi story than I’ve mentioned here. But through all of this – and so much more, there has been an ever-growing army of incredible people.

You know who you are.

The fundraisers, the corporate partners, the awareness raisers, the donors, the HQ team, the doctors, the policy influencers, the politicians, the volunteers.

And more.

I am indebted to each and every one of you. Because today, more people know Kawasaki Disease than I could ever, ever have imagined.

Yes – we have more to do.

But we can and we must celebrate today. We’ve come so far. TOGETHER. We’ve come so far FOR OUR CHILDREN. We’ve come so far….

I’ll carry on, and I know you’re with me – until EVERYONE (EVERYONE!) knows Kawasaki Disease.

It’s the leading cause of acquired heart disease in our children. And they deserve to grow up in a *society* that sees this condition. A *society* that can respond.  A *society* that can act and take care of everyone affected.

And so, Societi began. Just as it will continue.

Are you standing with me for the next 7 years? I hope so. ❤️

Happy birthday xxx

Rachael, Societi Founder ❤️