pwsa_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