Thank You to Our Fundraisers – Spring 2026

Our last fundraising blog finished at the end of April and featured Sarah and her amazing friends and family, who took part in the Kiltwalk for her son Ryan. If you missed it, you can read all about Sarah and our other incredible fundraisers from the start of the year here.

Chloe contacted us to tell us she was planning to swim an incredible 50 miles, inspired by her little brother Caleb.

Why 50 miles? Because that's the distance between their home and the hospital Caleb travels to for his check-ups.

Chloe started her challenge in April and completed it on 15th May, perfectly timed for PWS Awareness Day – what an amazing achievement!

Chloe said:

"I really enjoyed doing the 50-mile swim, knowing I was raising so much awareness in my community! Caleb joining me for my last two lengths was definitely very special and I hope in the future we can do more challenges together. There were definitely a few times I thought I wasn't going to get it finished, but the support from everyone really pushed me through. I'm not sure my shoulders have recovered yet, but I'm definitely looking forward to getting back in the pool. I'm so glad I'm able to do challenges like this and I'm excited to plan my next one."



By the time Chloe's JustGiving page closed, she had raised an incredible £1,615.

Thank you so much, Chloe. We can't wait to see what challenge you take on next!

Lola's Brownie charity badge

Lola has a little brother, Chester, who has PWS. As a very proud Brownie, Lola has been working hard towards earning all of her badges. When it came to her Charity badge, she knew exactly what she wanted to do – design and sell PWS awareness pin badges.

Lola's mum got in touch to tell us about her idea, and we absolutely loved it. The badges looked so professional!



We think Lola's mum sums up her fundraising perfectly:

"Lola decided to make and sell PWS awareness badges as part of working towards her Brownie charity badge, which she has now achieved. She sold over 200 badges and was amazed by how many people wanted to support her.

As part of her fundraising, she went round to every class in school with a fact board she created and spoke about PWS. She talked about how it affects her brother Chester, what family life can be like, and how we cope day to day. She also shared how both me and her nana help by making special meals for Chester and supporting him with his routine.

The school were fantastic and really got behind her. Everyone wore orange to raise awareness of PWS and support what Lola was doing. It was lovely to see so many people asking questions and wanting to learn more about PWS.

We're incredibly proud of her. The money raised is amazing, but for me the awareness she has raised and the conversations she has started about PWS have been just as important."

Lola's pin badges raised an amazing £600.

Thank you so much, Lola!

Jenna and Ian's Birmingham 10K

Jenna, mum to Isla, and her dad Ian took on the Birmingham 10K, raising an incredible £3,134. Their JustGiving page is still open if you'd like to support them.

Jenna shared these lovely words about the day:

"The run was absolutely fantastic. Everyone was so positive and amazingly supportive, which really got me through it. Whenever my legs felt tired (which was a lot!), I thought of Isla and everyone with PWS who has to work so incredibly hard every single day whilst always having smiles on their faces, with the most determination and dedication.

I feel inspired every single day being Isla's mum. I wanted to show Isla that anything is achievable and that we love her so, so much. We're so thankful to PWSA UK for all the support they give families living with PWS and I couldn't be more proud of the money raised."

Thank you so much, Jenna and Ian!

Kerry's Easter Island Ultra

Many of you will know Kerry. He is a parent and has supported PWSA UK for many years and is also one of our fantastic volunteers.

This year, Kerry travelled across the world to take on an incredible ultramarathon on Easter Island.

Here's what Kerry had to say:

"I've done a few fundraising challenges over the years, but having recently officially become an OAP I thought I might have to dial things down a bit.

Then I heard about the first-ever ultramarathon on Easter Island and I just had to have a go! Over several days and 115km I got to see the entire island on foot, accessing historic sites that most visitors never get to, and seeing many of the hundreds of Moai statues which litter this amazing place. The big ultra day of 50km included some torrential rain, which was actually quite welcome in the tropical heat. As I reached the finish line I reflected on how lucky I was to have such an incredible experience while simultaneously raising funds for the wonderful PWSA UK."

Kerry has raised an amazing £1,845 so far, and his JustGiving page is still open.

Thank you so much, Kerry – and wow, what incredible photos!

PWS Awareness Month

As you know, May was PWS Awareness Month. This year saw families, schools, nurseries, workplaces and residential settings all going orange for PWS. Head over to the PWS Stronger Together social media pages to see all the amazing things our community did to raise awareness and vital funds for support and research throughout the month.

Up at The O2

You may have already seen some of these fantastic photos, but we couldn't let this achievement pass without celebrating it again!

We were joined by Michelle, Geezer, Cheryl, Alexander, Tania, Sue, Elliot, Honey, Jodie, Seth, Daniel, Reuben, Kelly, Gift, Ruby, David, Robert, Cerys, André, Craig, Colette, Jane, Charles, Paige, Sam and Laurence, with friends and family cheering them on every step of the way.

A special thank you goes to Garry, Colette's dad, who brought along his mega camera and captured some incredible action shots.

Together, our amazing climbers have now raised an incredible £8,684!

It was quite a sight seeing a huge 'snake' of orange making its way up and over The O2.

Thank you to everyone who donated, supported and encouraged our daredevil climbers. You are all amazing!

The All Star Football Tournament

Louise, mum to Jevayah hosted the All Star Football Tournament for the second year running at Redbridge Football Club.

Louise said:

"This event is all about coming together, having fun and raising awareness for PWS. Whether you're a player or a fan, don't miss out on the chance to support a great cause and enjoy some awesome football moments."

This year was extra special as PWSA UK entered its very own team, made up of dads, friends and professional carers of people with PWS.

Louise raised an amazing £500 through the event.

She's already secured the date for next year's tournament - so keep an eye out for more information!

Thank you, Louise, for your continued support.

Gemma, Magnus and family - Lee Valley VeloPark 5K

Congratulations to Gemma, Uncle Ollie, Magnus, who has PWS, his brother Fraser - superstar running buddy - and their Grannie Jane, who all completed the 5K at Lee Valley VeloPark in 30-degree heat!

Gemma said:

"I never would have dreamt this would have been possible 15 years ago. So proud of Magnus, Fraser, Ollie and, last but not least, Grannie at 75! Thank you Bampa for chauffeuring, photography and moral support. WHAT A DAY!"

A huge congratulations to the whole family. You can still support them via their JustGiving page.

Thank you.

Wow - what an incredible few months of fundraising!

Thank you to every single person who has organised an event, taken on a challenge, made a donation, shared a fundraising page or simply cheered our fundraisers on from the sidelines. Every single action makes a difference.

Our fundraising community continues to grow, and we are so grateful for each and every one of you.

If you've been inspired and would like to fundraise for PWSA UK, we'd love to hear from you. Please email admin@pwsa.co.uk to find out more.

Thank you for your continued support.