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We share the concerns of RNIB and many other charities that support people living with sight loss and other disabilities. If you can, please consider sending the pre-written email to your local MP. All you need to do is fill in your postcode and the rest is done for you.

We share the concerns of RNIB and many other charities that support people living with sight loss and other disabilities. If you can, please consider sending the pre-written email to your local MP. All you need to do is fill in your postcode and the rest is done for you.We feel greatly let down by today’s Universal Credit and Personal Independence Payment Bill.

Ministers heard loud and clear that cuts to essential health and disability benefits would push many disabled people into poverty and further from work.

Instead of changing course, the UK Government is continuing with its damaging plans, without all the necessary impact assessments and an opportunity for disabled people to share their views.

The bill’s sweeping cuts to health and disability benefits could significantly affect blind and partially sighted people.

Thousands who require Personal Independence Payment (PIP) to live independent lives will not meet the new tightened criteria if the plans go ahead.

The only small concession in today’s bill is to allow current PIP claimants who no longer qualify 13 weeks additional time before they lose the support they are receiving.

This is no substitute for the loss of an average of £4,500 a year which some claimants will experience.

MPs are set to vote on these plans within the next two to three weeks.

We will be doing all we can to stop these cuts and urge MPs to vote against the plans.

The more that MPs hear from you, their constituents, the more they will be aware of the impact the cuts would have on blind and partially sighted people, and the more likely they are to raise concerns in Parliament.

Send your MP an email now: rnib.in/PIP25Fb

[Image description: "Today’s Universal Credit and Personal Independence Payment Bill proposes sweeping cuts to benefits that could affect many blind and partially sighted people." Graphic with black text on a white background.]
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🎉 We’re excited to share that all 4 places for the London 10K are now filled – thank you so much to everyone who showed interest in running for BBS UK! 💙🏃‍♀️🏃‍♂️

If you didn’t get a spot this time, there are still plenty of ways to get involved:

✅ Sign up to any race yourself and fundraise for BBS UK—we’d love to have you on the team!
📄 Our Fundraise for BBS UK guide (linked in bio / attached / available on our website) walks you through setting up a JustGiving page.
📧 Need help or want to chat ideas? Email us at fundraising@bbsuk.org.uk.

💡 We’ve also got charity places in future races, so make sure you’re on our mailing list to hear about them first—just drop us a message at fundraising@bbsuk.org.uk to be added!

Thanks again for all your support. Let’s keep the energy going! 💪

🎉 We’re excited to share that all 4 places for the London 10K are now filled – thank you so much to everyone who showed interest in running for BBS UK! 💙🏃‍♀️🏃‍♂️

If you didn’t get a spot this time, there are still plenty of ways to get involved:

✅ Sign up to any race yourself and fundraise for BBS UK—we’d love to have you on the team!
📄 Our "Fundraise for BBS UK" guide (linked in bio / attached / available on our website) walks you through setting up a JustGiving page.
📧 Need help or want to chat ideas? Email us at [email protected].

💡 We’ve also got charity places in future races, so make sure you’re on our mailing list to hear about them first—just drop us a message at [email protected] to be added!

Thanks again for all your support. Let’s keep the energy going! 💪
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Wed like everyone to give a warm BBS UK welcome to our new team members: Beatrice and Alis!

Weve been able to create two much needed roles within our Advice Service thanks to a generous legacy donation from Jackie Farringtons estate.

Beatrice and Alis will be working alongside our Advice Service Manager, Rebecca Perfect, lending their expertise and experience to the BBS community. 

The Advice Service help individuals with BBS to access the local support they need across health, education, and social care, including negotiating support packages, helping with housing issues and benefits applications, and with future planning.

Photo 1 text reads: Beatrice Adeogun, Advice Worker. Beatrice has a background as a support worker and is also a qualified social worker. She brings frontline experience of supporting individuals and families through complex challenges. Her personal experience of being a parent to a disabled child gives her a deep understanding of the needs of families navigating disability and social care systems.

Quote: “Im so excited to be joining the team and looking forward to meeting the community, learning more about the amazing work being done and supporting people in anyway I can.”

Photo 2 text reads: Alis Stevens, Advice Worker. Alis started teaching in 2010 and spent years in a South Bristol school before stepping into a dual role as a Family Support Worker. Passionate about understanding and helping families, she built deep connections and developed expertise in supporting pupils with both diagnosed and undiagnosed SEN. In her final teaching year, she worked in an SEN base, supporting students and families across all aspects of life.

Quote: “I am excited to join the team and am looking forward to supporting service users and join the community!

We'd like everyone to give a warm BBS UK welcome to our new team members: Beatrice and Alis!

We've been able to create two much needed roles within our Advice Service thanks to a generous legacy donation from Jackie Farrington's estate.

Beatrice and Alis will be working alongside our Advice Service Manager, Rebecca Perfect, lending their expertise and experience to the BBS community.

The Advice Service help individuals with BBS to access the local support they need across health, education, and social care, including negotiating support packages, helping with housing issues and benefits applications, and with future planning.

Photo 1 text reads: Beatrice Adeogun, Advice Worker. Beatrice has a background as a support worker and is also a qualified social worker. She brings frontline experience of supporting individuals and families through complex challenges. Her personal experience of being a parent to a disabled child gives her a deep understanding of the needs of families navigating disability and social care systems.

Quote: “I'm so excited to be joining the team and looking forward to meeting the community, learning more about the amazing work being done and supporting people in anyway I can.”

Photo 2 text reads: Alis Stevens, Advice Worker. Alis started teaching in 2010 and spent years in a South Bristol school before stepping into a dual role as a Family Support Worker. Passionate about understanding and helping families, she built deep connections and developed expertise in supporting pupils with both diagnosed and undiagnosed SEN. In her final teaching year, she worked in an SEN base, supporting students and families across all aspects of life.

Quote: “I am excited to join the team and am looking forward to supporting service users and join the community!"
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🦸‍♂️ It’s #CarersWeek — and at BBS UK, we’re shining a light on the everyday heroes behind the scenes.

Carers are the lifeline for people living with #BardetBiedlSyndrome. They manage personal care, support education, coordinate endless medical appointments, juggle transport, navigate complex and confusing benefits and council systems — and that’s still not the full list.

It’s a 24/7 role with no pause button.

We appreciate you. Thank you for everything you do 💙

#BBSUK #CarersWeek2025 #ThankYouCarers #UnpaidCarers
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Conference recordings are now available on our YouTube channel: www.youtube.com/@bardet-biedlsyndromeuk2209/playlists

A few notes about two of the videos:

1. Planning for the Future – Wills, Trusts and Decision Making
This video will only be available for two months. Because it contains legal information, it’s important to note that advice in this area can quickly become outdated as laws and policies change.

Renaissance Legal have asked us to limit the availability of this recording to ensure that viewers are not relying on information that may no longer be current. We strongly encourage you to seek professional legal advice for guidance that reflects your individual circumstances.

You can also watch the full presentations as well as other seminars for free through Renaissance Legal’s own events. Visit their website for more information:
renaissancelegal.co.uk/event-seminar/

2. Communication at a Cellular Level: An Accessible Update

This was a highly tactile and hands-on session, which may not fully translate in the recording. However, we’ve shared it in case you still find it useful.

We hope you enjoy the recordings and find them valuable!

#BBSUKConf2025 #BardetBiedlSyndrome
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0 CommentsComment on Facebook

51.8km, over 1,000m of elevation, and seriously tough terrain—but he did it! All while raising awareness of Bardet-Biedl syndrome and the work we do to support individuals and families living with #BardetBiedlSyndrome.

Thank you so much, Andre, for taking on this incredible challenge and for choosing to highlight how vital our work is. We’re so grateful for your support—and your strength!

Heres some beautiful photos of Andre running the Ultra X Finland 50km.

If you feel inspired to take on a fundraising challenge, contact us at fundraising@bbsuk.org.uk and well help to get you started!

51.8km, over 1,000m of elevation, and seriously tough terrain—but he did it! All while raising awareness of Bardet-Biedl syndrome and the work we do to support individuals and families living with #BardetBiedlSyndrome.

Thank you so much, Andre, for taking on this incredible challenge and for choosing to highlight how vital our work is. We’re so grateful for your support—and your strength!

Here's some beautiful photos of Andre running the Ultra X Finland 50km.

If you feel inspired to take on a fundraising challenge, contact us at [email protected] and we'll help to get you started!
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