pwsa_uk

Thank you to our fundraisers

Fri, 15 May 2026 13:40:12 GMT

A Fantastic Start to the Year for Fundraising

We’ve had an incredible start to the year for fundraising, with some amazing supporters organising their own events or taking part in PWSA UK challenges. It’s been truly inspiring to see the creativity, dedication, and generosity from our community.

25th February – Quiz Night in Hastings

Darren Reid from Amber House, PWS Care, hosted a brilliant quiz night in Hastings.

Darren cares for adults with PWS in his role at Amber House and organised the event, raising an incredible £805 . He also reached out to local businesses to donate prizes, and we would like to extend our sincere thanks to Hastings Football Club, Hastings Deluxe Bingo, Bexhill De La Warr Pavilion, Hastings Adventure Golf, Odeon Cinema Hastings, TK Maxx Hastings, J. Fountain & Sons Ltd, Premier Stores Hastings and Brickz n Bits Lego Shop Hastings for their generosity.

A fantastic community effort – thank you to Darren and everyone involved.

Darren and Amber House have lots more planned, we can't wait to see what you get up to!

4th April – Pen y Fan Challenge

Rose Felloni (our John Booth Award winner 2025) continues her year of fundraising in celebration of her 80th birthday, planning one event each month.

In April, Rose and her family took on an unforgettable challenge: climbing Pen y Fan while transporting a fridge filled with cans of beer!

Rose shared her experience with humour and honesty:

“Yes, we’ve all recovered! The harness holding the fridge broke, so plan B was to drag it up the mountain. Just before the top one wheel fell off, and the other came off during the descent. Luckily, two other climbers helped Phil get it down. It went up full of beer and came back still full! Storm David tried its best to blow us off the mountain. I gave up about a quarter of the way up due to my hip and arthritis, and Chris and his party even broke down on the way and had to be towed home. Sarah couldn’t wear her Spitfire costume due to the wind, so was well wrapped up at the summit. My great-granddaughters (aged 10 and 14) made it to the top but got soaked through – we even had to find a launderette afterwards! Now rested and ready for the next adventure.”

We are so pleased to hear everyone made it safely up and down. Thank you, Rose, for yet another truly memorable and determined fundraising challenge – we can’t wait to see what you do next!

1st April – Wing Walk for a 60th Birthday

John Sandford, father to Clare, marked his 60th birthday with an incredible wing walk fundraiser – an unforgettable (and slightly nerve-wracking!) experience.

John, no stranger to adventurous challenges, took it all in his stride and raised funds for both PWSA UK and Carrickfergus Urban Farm, where Clare has worked since leaving school.

John raised an amazing £1,200. Thank you, John – we hope you had a brilliant birthday and a safe landing!

4th April – Boro Rangers vs Marske

Boro Rangers Football Club once again supported PWSA UK as their match day charity, continuing their wonderful commitment to the cause.

Josh, whose son Henry has PWS, shared:

“This is the second year running that Boro Rangers have chosen PWSA UK as match day sponsor. We are extremely grateful to the Chairman, management team, players, staff and everyone involved for their continued support.”

A fantastic partnership – thank you to everyone at Boro Rangers.

19th April – Manchester Marathon

We were delighted to see four fantastic fundraisers take part in the Manchester Marathon:

Anthony – running for a close friend with a family connection to PWS
Matt and Dan – brothers to someone with PWS
Christina – a support worker for an adult with PWS

Matt before taking on the challenge 'This April, Dan and I are taking on the Manchester Marathon to raise money for the Prader-Willi Syndrome Association UK - a charity that’s close to our hearts. Our sister, Megan, lives with Prader-Willi Syndrome, a rare and complex genetic condition. We’re running to give back and help PWSA UK continue their vital work - offering support to families like ours, raising awareness, and funding important research.'

An incredible achievement from all runners – thank you for your dedication and support.

26th April – London Marathon

The London Marathon continues to be a vital fundraising event for PWSA UK, and this year we were proud to have seven incredible runners take part.

Three secured places via the public ballot, and four ran with PWSA UK Golden Bond places:

Alan – ran for his daughter
Tom – ran for his niece
Kyle – ran for his sibling
Kai – ran for a family member
Charles – ran for his uncle
Ian – ran for his daughter

It was a truly special day, with multiple world records broken and an amazing atmosphere throughout. It was wonderful to see so many people running in support of PWS and the families affected.

Apply for the 2027 London Marathon here: https://forms.gle/33kd1TD8xYxj35Gw6

26th April – Kiltwalk: Team Ryan

Ryan’s Kiltwalk is a very special annual event organised by Sarah, Ryan’s mum. Ryan sadly passed away at just 13, and this year marked the second Big Stroll completed by Sarah, her family and friends in his memory.

Sarah shared:

“I am so grateful to everyone who has taken part and donated. Team Ryan continues to make me proud. I know Ryan will be looking over us all and be so proud of our continued fight for help for his fellow PWS family.

We’ve also had agreements from camhs and NHS Glasgow to make changes to the way children with PWS are treated and have promised to see this condition as an eating disorder, which in my opinion is the worst one there is. They’ve agreed to change the referral process for children and young adults with PWS too. I will continue to fight for the rights of every single person with PWS. Ryan didn’t receive the help he so desperately needed and deserved, but knowing he will continue to save lives after his death, what a legacy to leave behind”

Thank you Sarah.

Ryan’s legacy continues to inspire meaningful change and support for others.

T hank you!

We are incredibly grateful to all our fundraisers who continue to make such a difference to the work we do. Your energy, kindness and commitment help us support individuals and families affected by PWS every day.

If you would like to take part in a fundraising event, please contact: admin@pwsa.co.uk

It's PWS Awareness Month!

Fri, 01 May 2026 13:45:23 GMT

A round up of everything going on this May

May is PWS Awareness Month, and this year, there are more ways than ever for you to get involved and raise much-needed awareness and funds for Prader-Willi syndrome.

After polling, the community decided that PWS Awareness Day is to be celebrated on May 15th this year. This reflects the involvement of Chromosome 15 in Prader Willi Syndrome and brings us into line with the US, Canada and Ireland.

We are very proud to continue to work together with the Foundation for Prader-Willi Research during May under as part of the PWS Stronger Together partnership. This means that all funds raised during Awareness Month will be shared between the two charities, to provide vital support and research to help improve life for people with PWS.

This year, we're encouraging schools, workplaces, residential settings, families and supporters to get involved in a way that works for them.

Schools

On May 15th, we’re inviting schools to ‘ Go orange for PWS ’ , inviting pupils to wear something orange, instead of their uniform and donate £1 to PWS Stronger Together.

We have created ‘Go orange’ packs of resources for schools, so the day can also be a learning opportunity for pupils, helping them understand the condition and how they can help to support people with PWS. Find out more here

Families and Supporters

Show your support by going orange, taking part in a movement challenge, or getting creative!

Download our PWS Awareness Day inspiration sheet for lots more ideas about how you can fundraise in a way that works for you and your family.

Workplaces

This year we're encouraging everyone who has a loved one with Prader-Willi syndrome to raise awareness of PWS at their workplace.

Get your workplace involved by taking part in a team fitness challenge, 'going orange' on 15th May, making a pact to take the stairs, or even donating your daily coffee money!

Help educate your work colleagues about PWS and why you are raising money by displaying posters, making a PWS fact board or adding a footer to your email.

Download all our fundraising ideas and information for workplaces

D ownload the poster for workplaces

PWS Residential Settings and Supported Living

We'd love to see PWS providers getting involved by raising awareness, going orange, or hosting an event or fundraising challenge on May 15th

You could spread awareness and get creative at the same time by designing posters, decorating windows or creating an PWS awareness wall.

Alternatively you could get everyone moving with a team activity challenge...

Download all our fundraising ideas for PWS providers here .

Celebrating reasons to be hopeful

This year, our theme for PWS Awareness Month is 'Reasons to be Hopeful'. We spend a lot of time focussing on the challenges PWS can bring, but with the right support, we know people with PWS can thrive and our wonderful community surprises us every day. Throughout May, we'll be celebrating people with PWS and the incredible things they can achieve, if they are supported in the right way.

If your person with PWS has achieved something you never thought they would, or just made your day with their kindness or the things they say and do, send us a message to admin@PWSA.co.uk and we'll celebrate them this May. Don't forget to send a photo and tell us all about it!

New connections and sharing joy at our PWS Adult Conference

Fri, 01 May 2026 11:43:42 GMT

We had a wonderful day at our second conference for adults with PWS!

It was great to see so many familiar faces attending and to meet some new ones too.

The conference was produced and hosted by the Owl Focus Group, our steering group of adults with PWS.

They designed a brilliant program including a listening exercise, an online safety session and a music workshop. We also took some time to thank the members of the OFG who have finished their time in the group for their service and welcome some new members.

It’s always lovely to see how much joy it brings people with PWS to be able to spend time together and the care and understanding they show for each other never fails to amaze us.

New course for social skills in PWS

Fri, 27 Mar 2026 12:10:30 GMT

Our first set of graduates have successfully completed the BOSS course!

Congratulations to our very first BOSS course graduates; Aaron, Lizzie, Millie, Rowena, Charles, Kerry, Eve and Sam!

The BOSS (Building Our Social Skills) course is a structured programme designed to give people with PWS tools to handle emotional and communication challenges. The curriculum helps people with PWS build skills to read facial expressions, tone of voice, and nonverbal cues. It can also help people try out problem-solving strategies, make new friends in the group and in real-world settings, and focus on what they can do better.

Our graduates had some brilliant feedback about how the course has helped them:

"What helped me most is learning about other people’s emotions and learning how to cope when things get tough for me."

"A couple of things has helped me the most in the course and that is putting my point across to make myself heard, and helped me to try and relax and calm me down."

"I feel most proud of myself for communicating clearly for help with what I needed."

The BOSS course was developed by PWS specialists at Vanderbilt University in the US, funded by the Foundation for Prader-Will Research UK and the Foundation for Prader-Will Research in Canada, then delivered for the first time in the UK by staff and a volunteer here PWSA UK! We're really proud to have been part of this collaborative effort.

Catherine Shaw, Chair of FPWR uk says:

"It’s fantastic to see FPWR UK–funded research coming full circle through the BOSS programme, now making a meaningful difference in people’s everyday lives. This shows how collaboration between research and support organisations can translate into real, tangible outcomes for the PWS community."

A new PWS Specialist Adviser for Scotland

Wed, 11 Mar 2026 17:28:04 GMT

Sandra Thoms has joined our team to provide support and advice for Prader-Willi syndrome in Scotland

We recently welcomed a new face to our PWS Specialist Advice Team at PWSA UK, Sandra Thoms.

Sandra brings with her extensive experience supporting children, young people and adults with a wide range of complex needs in Scotland. One of our key objectives at PWSA UK is to ensure that people with PWS and their families have access to the support they need to live healthy and fulfilling lives, wherever they are in the UK.

Many aspects of the health and education system in Scotland are different from the rest of the UK, and Sandra's expertise means that she can help our Scottish PWS community navigate these systems to access the care and support they need. Sandra is based in Lanarkshire which also makes her perfectly placed to meet our Scottish community in person and attend clinics, meetings and events as needed.

Sandra says:

"The most valuable learning throughout my career has come from the individuals and families I’ve had the privilege to work alongside. Their lived experiences have shaped my understanding more than anything else. I am delighted to take on my role with PWSA UK and look forward to continuing to learn about PWS, and to working together with families and professionals to make a positive difference.

Outside of work, I have an adult daughter with a dual diagnosis of ASD and ADHD, who I love spending time with, pamper evenings are our favourite. I also enjoy walks on the beach whenever I can, learning new things, and spending time with good friends."

Sandra's got straight to work trying to bring about positive change for people with PWS north of the border. So far she's already been to the Scottish Parliament to raise awareness of PWS for Rare Disease Day and been out meeting families and professionals across Scotland.

You can contact Sandra using our support request form here.

Every child achieving and thriving?

Mon, 09 Mar 2026 15:55:42 GMT

What will the government's SEND reforms mean for children and young people with PWS?

Last week the government set out it's plan for SEND reform, in a white paper called "Every child achieving and thriving".

This plan commits £4 billion with the aim of creating a more inclusive system and address current failures.

It includes the creation of new Individual Support Plans (ISPs) with legal standing for all children with SEND, and more SEND provision in mainstream schools, while Education, Health and Care Plans (EHCPs) will be reserved for those with the most complex needs. You can read more details about everything in the plan here .

PWSA UK has contributed to the consultation process for this plan. Patsy, our Support and Information Team Lead, attended the consultation meetings hosted by the Disabled Children's Partnership and emphasized that all children with PWS have a learning need that requires a thorough EHCP. Drawing on the experiences of the many students with PWS we have supported, Patsy demonstrated how mainstream settings normally only work when there is full time 1:1 in place, and that the syndrome isn’t taken seriously enough. We emphasized that PWS can be seen as an overeating disorder with no consideration of the complex needs that go along with it and how this impacts people's access to education.

While we welcome the extra funding the government has committed and the recognition that all children with SEND should have a legally backed support plan, we are watching developments closely and insisting that all children and young people with Prader-Willi syndrome should still have EHCPs and fall into the 'most complex needs' category. We are continuing to work closely with the DCP on this and emphasizing that PWS must be taken seriously within the education system and that professionals should come to us as a first port of call.

The government is now consulting on this paper and wants to hear from parents of young people with SEND. Y ou can respond to the consultation process here until May 18th .

In the meantime, if you have any concerns about the education your child is receiving, our PWS Specialist Advice Team can help you navigate the SEND system and get the right support in place for your child. Find out more here

Aardvark HERO Trial Pause: Community Conversation

Tue, 03 Mar 2026 16:49:30 GMT

Join a community discussion to hear more about the recent pause in Aardvark's HERO trial

Last week Aardvark Therapeutics announced that they have temporarily paused enrolment and dosing in the HERO trial.

This is disappointing news for our community, particularly those who have volunteered to participate in the study.

Aardvark has told us that everyone already involved in the trial will be contacted to discuss this - if you haven’t, please reach out to your study site contact.

PWSA USA and FPWR will be hosting a community conversation with Aardvark on 3rd March to discuss the pause in the trial and what this means for participants. Because this is primarily for those based in the US, unfortunately for those of us in the UK, this will be at 1am GMT on 4th March .

We appreciate this will mean many families are unable to take part, so we will provide an update about the content afterwards.

The goal of this meeting is is to create a space for open dialogue, shared understanding, and connection. Ensuring that families, caregivers, and individuals with PWS have access to accurate information and an opportunity to hear directly from Aardvark is important to all of us at this time.

Link to register: https://us02web.zoom.us/webinar/register/WN_pkArayuFTWy_IrIPIXAvPw