We were absolutely delighted to welcome so many of you to our Family Weekend in May at The Hilton, Leicester. The event was a heartwarming blend of connection, learning, and support—a true celebration of our community spirit. Thank you to everyone who joined us and made it so special!
We were absolutely delighted to welcome so many of you to our Family Weekend in May at The Hilton, Leicester. This year, we took a chance by changing the location, and we sincerely hope you agree that the hotel was a better fit for our group and that the food was of noticeably higher
quality. The new venue provided a warm and comfortable setting for everyone to connect, learn, and share experiences—a true celebration of our community spirit.
Our Activity Club proved to be a great success, with children and young people enjoying a fantastic array of games and creative activities, leaving parents and carers free to relax and make the most of the weekend. Another highlight was the trip to Cadbury World, which was met with plenty of smiles (and a few chocolatey fingers!) and thoroughly enjoyed by all who attended.
On Saturday afternoon, we held our AGM, which went smoothly and efficiently, thanks to everyone’s cooperation and thoughtful participation. Thank you to everyone who joined us and made this year’s Family Weekend so special!
We’re so grateful to the experts who generously shared their time, knowledge, and unique
perspectives with our community:
Good news: Some of these presentations—packed with practical advice, research findings, and answers to your questions—are now available in the Members-Only Area of our website. If you missed the live sessions, be sure to catch up online!
Our Stronger Together Campaign is making real and lasting change across the Sturge Weber UK (SWUK) community. The campaign’s goal is simple yet powerful: unite every member around raising at least £200 per year. This collective effort helps us fund breakthrough research, provide essential support for families, and spread much-needed awareness of Sturge-Weber syndrome. Every contribution—big or small—moves us closer to a world where no one faces Sturge-Weber syndrome alone.
With everyone’s help, the possibilities are incredible. If each member raises £200, we could reach an amazing £50,000 in a single year—imagine the difference we could make for families right across the UK.
Here are some simple, rewarding ways to reach your £200 goal and support our mission:
Every £200 you raise helps us:
With every member’s support, we’re already seeing amazing results. For example, 44 members have joined Easyfundraising, raising an incredible £636.95—without spending a penny extra. Haven’t signed up yet? Scan the QR code and help grow our total. Every click truly counts!
To keep the charity running and growing, we urgently need more Trustees—this is not just important, it’s essential to our future. At present, we are down to just three trustees, which leaves us stretched and, frankly, vulnerable as an organisation.
Most critically, we need a Treasurer as a matter of priority. The Treasurer’s role is vital: they ensure our finances are managed responsibly, help us plan for future projects, and keep us compliant with all legal requirements. Without a dedicated Treasurer, our ability to fundraise, allocate resources, and deliver on our mission is significantly hampered.
We’re also looking for support in areas such as:
If you have experience or a passion for making a difference in any of these areas, please consider joining us. Your contribution could be the key to helping Sturge Weber UK continue its work and support the community for years to come.
Interested? Email support@sturgeweber.org.uk or contact Marie directly for a friendly chat.
We’ve made some exciting updates to our website:
Take a look and let us know what you think!
We’re committed to making Sturge Weber UK as open and supportive as possible for all of our members. Whether you’re newly diagnosed, caring for a loved one, or a long-time supporter, we want our digital space to be a welcoming hub for connection and information. You’ll find updated guides, frequently asked questions, and a fresh calendar of events—so you never miss out on what’s happening in our community.
If you haven’t explored the new features yet, now’s the perfect time. Your feedback is invaluable and will help us continue to develop resources that matter most to you.
To host the Family Weekend each year, we need to raise £40,000 annually.
We’re proud to share that the Trustees have now agreed on a:
Copies of these documents are included for your reference, giving you an inside look at our vision for the future and the steps we’re taking to secure our charity’s growth. These plans reflect our long-term commitment to expanding the charity and supporting our members.
The Make A Difference Grant scheme is still open!
Don’t miss your chance—apply today and let us help you make a difference.
Friday 22nd May to Monday 25th May 2026
The Hilton, Leicester
Booking forms will go live soon in the Members-Only Section of the website—please watch this space!
Mark your calendars and stay tuned for further updates as we prepare for this next year’s event! Over the course of the weekend, you’ll have the opportunity to engage with fellow members, participate in interactive workshops, and hear from inspiring guest speakers who share our dedication to making a positive impact.
Whether you’re a long-standing supporter or new to our charity, our upcoming gathering at The Hilton, Leicester promises to be a fantastic occasion for connection, learning, and celebration. Registration details and a full programme of activities will be available soon, so keep an eye on
your inbox and our Members-Only Section for the latest announcements.
We can’t wait to welcome you—together, let’s continue building a brighter future for our community.
