Awareness Month

The story so far:

£

Raised for research into Ageing in PWS.

2025: Raising the Bar for Awareness and Action

May 2025 was another unforgettable PWS Awareness Month for our community – and a true celebration of what we can achieve together through the PWS Stronger Together Partnership.

You danced, stretched, rolled, walked, and wiggled your way through Move It May, clocking up thousands of active minutes and inspiring others to get moving in support of Prader-Willi Syndrome awareness.

On 30th May, 18 iconic landmarks across the UK lit up orange as part of our Glow Orange campaign – from city centres to coastlines – helping shine a national spotlight on PWS. Social media turned a sea of orange as individuals, schools, and communities came together to Go Orange and show their support.

Our campaign gained national recognition, with coverage in major outlets and a major step forward at our House of Lords event, where we raised awareness directly with key decision-makers.

We also shared the exciting news that Soleno Therapeutics has submitted DCCR for review to the European Medicines Agency – a positive milestone in our journey toward better treatment options.

Thank you to every single person who got involved this May. From the smallest actions to the biggest events, you helped amplify our message, raise awareness, and push for change. We truly are stronger together.

2024: Lighting Up the UK Orange

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May 2024 was an incredible PWS Awareness Month for our community. The first Awareness Month of the PWS Stronger Together Partnership. 

You ran, walked, swam, clapped and bum-shuffled virtually around the whole of the UK—covering an amazing 2,500 kilometres and clocking up over 59,000 Move It May Minutes!

An incredible 39 national landmarks lit up orange on 31st May 2024, shining a light on Prader-Willi Syndrome across the country. Our campaign was featured in 46 pieces of coverage in regional and national newspapers, helping us spread awareness further than ever before.

None of this would have been possible without the support of our wonderful community.  We want to thank everyone who joined in to light up the UK orange in conjunction with Glow Orange on Friday, 31st May.

Looking Ahead

At PWS Stronger Together, we believe every May is a chance to amplify our community’s voices, educate the wider public and stand united for change. Thank you to every family, professional, donor and friend who supported us these last two years.

We will continue to keep working to ensure everyone with PWS gets the understanding and support they deserve.

You can still donate to help fund research on Ageing in PWS, helping those living with this condition lead better lives.

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YOUR GENEROSITY HELPS

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Text PWSTOGETHER to 70470 followed by the amount you would like to donate. e.g PWSTOGETHER10 for £10 or PWSTOGETHER20 for £20. 


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If you would like to donate but don't wish to hear more from us, please text PWSTOGETHERNOINFO followed by the amount you wish to donate.

Your generosity helps

Fundraise

You can create a campaign page on GiveStar, which allows you to create a fundraising page to fundraise for PWSA UK and FPWR UK.


GiveStar is available online via the link below or as an app, which can be downloaded on Android and iOS.