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The Countdown to Conference fundraising challenge begins!
We’re launching a Fundraising Challenge to see who can raise the most for BBS UK before our conference on 25th April.
🎉 What’s in it for you?
Pledge to raise £100 or more: Get a BBS UK T-shirt and fundraising pack!
Be a top 3 fundraiser: Win a limited-edition BBS UK hoody!
💡 Fundraising ideas
☕ Host a Meetup: Organise a tea party, cake sale, or a casual get-together to raise funds.
🚴 Get Active: Walk, run, cycle, or organise a sponsored activity with friends, family, or even your pets. Every step counts!
💡 How to Maximise Your Fundraising:
🎯 Share Your Story: Tell people why you’re fundraising for BBS UK—your passion can inspire others to donate!
📢 Spread the Word: Post updates and ask friends to share your fundraising page for extra support.
📩 Ready to get started? Contact us at [email protected], and we’ll help make your event a success.
Together, let’s make a big impact! 💪
#CountdownToConference #BBSUKConference
1 CommentComment on Facebook
Hi Nat I have emailed you a couple of things regarding conference and volunteer
Interested in technology that could transform the lives of people with vision impairments?
RNIB's Mark Baxter attended CES, a leading tech event and he is sharing his experience through a free to attend webinar on 23rd January.
Follow the link to the RNIB website for more information and to register:
Webinar: Mark Goes to Las Vegas
retinauk.org.uk
Hosted by Matthew Carr, Mark will discuss the cutting-edge technologies he encounters at CES that have the potential to impact those with retinal conditions. From advancements in assistive devices to�...0 CommentsComment on Facebook
"It is known that children with BBS often show differences in how
they communicate and understand social situations. Recent
studies suggest that around 75% of children with BBS will show
autistic tendencies, with an overall estimate of 33% identified as
being on the autism spectrum."
- BBS UK Medical Information Booklet
It's important to support children with neurodivergence navigate the digital world. Ambitious about Autism are hosting a free webinar for parents where you'll hear from safety professionals and autism experts.
Follow the link below for more information!Attend our free online webinar on 29 January, hosted in partnership with Internet Matters and Roblox.
In this live session you’ll hear from a diverse panel of experts including online safety professionals, autism specialists and a fellow parent who will share their practical tools to help you support your child to stay safe online.
Secure your spot today: bit.ly/41zwqb7
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📢 Book now for the BBS UK Annual Family Conference 2025!
We’re now in 2025 which means we’re three months away from our Annual Family Conference Weekend!
📅 Dates: Friday 25th – Sunday 27th April 2025
📍 Location: Hilton Northampton, NN4 0XW
Visit our website for more information and how to book:
bbsuk.org.uk
Attendees can look forward to a weekend filled with opportunities for connecting, sharing experiences, and staying informed about the latest research and0 CommentsComment on Facebook
On behalf of everyone at BBS UK, a heartfelt thank you for your support this year.
Whether you have been raising funds through events, making regular donations as a ‘Friend’, volunteering at our events, sharing our content on social media or supporting us in other ways, we couldn’t provide the support that we do, without you.
Just some of our work this year has included:
- Supporting the NHS-funded multi-disciplinary BBS clinics in Birmingham and London
- Providing information to professionals to improve the care they can give to those with BBS
- Supporting vulnerable members with accessing local support services
- Supporting at education, health and care plan tribunals to ensure our young members get the support they need
- Advocating for those who struggle to communicate with the many medical, social and educational service providers involved in their care
- Supporting with housing, benefits and social care applications
- Organising and subsidising two social events and running an online conference
The list goes on…
What is certain is that none of this would be possible without YOU and your support, so thank you, from the bottom of our hearts.
Wishing you all a very happy holiday season and a peaceful New Year
From our families to yours,
Team BBS UK and BBS UK’s Board of Trustees
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On behalf of Team BBS UK and our Board of Trustees, we'd like to wish everyone a happy holiday season!
1 CommentComment on Facebook
Merry Chirmas or in Manx Nollick Ghennal to uk bbs form Duncan in isle of man . the team in uk was so good me and my mun my frist time go to bimmerham big city to me as form samll island and 2024 first i told had bbs erly in yaer and give buch good infor for us take back to my gov in isle of man as am only bbs we kown of in isle of man so mery chistmas to bbs team be help me and my mum
Did you know that RNIB have their own 24/7 radio station Connect Radio? Listen to a mix of information, music shows, entertainment and interviews hosted by blind and partially sighted presenters.
Topics include technology, Talking Books, sports, accessible arts, vintage music, and emerging artists
Tune in through various platforms including Freeview Channel 730, online streaming, smart speakers, or 101FM in the Glasgow region.
1 CommentComment on Facebook
Such an amazing team running a brilliant listening experience!
BBS UK Trustee Bilaal Ali was the 100th intern to join the Get Set Progress internship programme, an initiative developed by Thomas Pocklington Trust in collaboration with the RNIB to support blind and partially sighted people to access work opportunities with inclusive employers.
You can read more about Bilaal and the internship programme by following the link below:
www.pocklington.org.uk
A series of videos demonstrating the accessible technology blind and partially sighted people use to perform tasks in the workplace as well as their fully sighted colleagues.1 CommentComment on Facebook
Its a pleasure to be part of such a lovely community thank you !
🎄❤️ Thank you for becoming a Friend of BBS UK! ❤️🎄
A HUGE thank you to everyone who signed up to become a Friend of BBS UK and donate monthly to our charity! Your support means the world to us and the families we help. 🌟
If you’ve already signed up, keep an eye on your post—your hand-knitted Christmas gift is on its way, if it hasn’t arrived already! 🎁🎅🧶
While the Christmas gift offer has finished, it’s never too late to make a difference. You can still become a Friend of BBS UK and support the vital work we do all year round for people with #BardetBiedlSyndrome and their families. 🌟❤️
Sign up today and help us continue making a lasting difference! 💫
bbsuk.org.uk/friends-of-bbs-uk/
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Latest News
Welcome to our new Chair, Emma Hughes! Emma was voted in as Chair at the Annual General Meeting on 9th November 2024.
Registration open for the BBS UK Annual General Meeting on 9th November 2024.
We’re inviting children with BBS in years 7-11 of secondary school to join us for an exciting weekend of activities and socialising in Birmingham this September!
Join us online for our annual conference! Expect updates on the research and management of BBS, invaluable personal perspectives from our members and an update on the work of BBS UK.
We need your help to review our Medical Information Handbook! We’re asking the whole of the BBS UK community including medical professionals to give us feedback.
The Annual General Meeting of Bardet-Biedl Syndrome UK will be held at the Hilton Hotel, Northampton, on Sunday 24th September 2023 at 10.30am to 11am.
Join families from around the world as they take action on BBS Global Day to raise awareness and funds for the BBS community – take a walk, ride a bike, share on social media, fundraise or donate – join the movement; Together we are Stronger.
Individuals with Bardet-Biedl syndrome (BBS) report experiencing emotional difficulties in addition to physical health difficulties. We want to find out more about what factors impact well-being in BBS.
Huge congratulations to Sarah Leadbetter who has this week won the RNIB’s See Differently Award for Campaigner of the Year.
Sarah has BBS, is registered blind, uses a cane and has a guide dog.