May is PWS Awareness Month!
JHorsfall • 28 April 2023
Help us raise funds and awareness of Prader-Willi syndrome
May is Prader-Willi Syndrome Awareness Month, which means it's time to really shout about PWS and the work we do to support families in our amazing community - and, of course, raise funds to ensure that this work can continue.
This year, you can get involved in a number of different ways throughout the month:
- Help raise funds for PWSA UK, whether through a sponsored activity or an event you have organised yourself. Please let our Fundraising Manager Karen know what you're planning, in case there's any support we can offer, including a fundraising pack or any branding/logos for your activity.
- Make a donation or become a member - YOUR support means WE can continue to support those who need us the most.
- Wear something orange for Go Orange Day (PWS Awareness Day) on Friday 26th May. Make yourself as orange as you can (the more creative, the better!) and send us your photos so that we can share them across our social media channels and in our magazine - and, as an extra incentive, the most orange photo will win a voucher for a free Treasure Trail experience suitable for the whole family with a choice of locations across the UK! Send your photos to admin@pwsa.co.uk.
- Encourage your school or workplace to Go Orange on 26th May in exchange for making a donation to PWSA UK! If you'd like a poster to put up in your school, college or place of work, then you can download one for free here.
- If you don't have any orange clothes at home, then you can buy an orange hoodie, snood or a cap from our online shop - but be quick because stocks are limited!
- Help raise awareness of PWS and the work we do by sharing our social media posts throughout the month. You can find us on Facebook, Twitter and Instagram - please SHARE and MAKE AWARE.
Thank you for your continued support!
Changes to our membership offer - and to the way we share our news!
Details of three PWS community days announced in Ayr, Skegness and Dorset!
T ARGET NOW REACHED - THANK YOU! You can still support our work by making a donation here .
Can you help with this important piece of PWS research?
The taster sessions will be FREE and we encourage parents, grandparents and children to join in!
PWSA UK and FPWR UK are kicking off a new collaboration by going orange together!
Our one-day conference for adults with PWS returns for 2023!
Three new videos for Awareness Month from Pilates instructor Joakim Valsinger!
Easter can be a particularly challenging time for families in our PWS community. However, there are ways to celebrate without the need to focus on chocolate.
A huge welcome to Jackie Lodge, PWSA UK's new CEO, who joins us today. Here's Jackie to introduce herself: I am truly honoured to be joining PWSA UK as your new CEO and it was a real pleasure to meet so many members and families at the recent conference. I am looking forward to working with you to help ensure that every member of the PWS community has access to high quality care, opportunity and support. I take over from Susan, who has led the charity so ably for more than 10 years. Susan has done so much for the PWS community across the UK, and she will be a hard act to follow. I have almost 30 years' experience working in the charity sector in a range of management roles. I was most recently the Chief Executive of an endowed charity in Surrey which provides supported housing, community buildings, and grants for organisations tackling need and poverty. I have led the charity for almost 15 years, developing new services as well as ensuring the long-term financial stability of the organisation. I am also Vice Chair of the People's Health Trust and a board member of Co-Op Homes. I previously worked for the British Heart Foundation, heading up the UK care and rehabilitation programs. During this time, I developed the BHF heart nurse programme to provide specialist care across the UK for people with heart failure. Prior to this, I held a range of management roles with the Age Concern federation supporting the governance of local organisations and the development of quality assurance for information and advice services. I have also held various trustee positions on local and international charities. I have a BA in Psychology and a master's degree in Charity Management from City University. I am married with two grown up children and live in Surrey with my border terrier. In my spare time, you’ll find me rowing on the River Thames or running alon g the tow path.
