Brittle Bone Society

The first of our Guest Blogs for 2020 is now live. Our thanks to Dom Hyams for talking about independent living and the invisible obstacles he faced during his recent move.
https://brittlebone.org/dom-hyams-guest-b log-independent-l…/

The Brittle Bone Society still has a few places left for those that would like to take part in the Vitality London 10K on 25 May 2020. (https://www.vitalitylondon10000.co.uk/)
This is a fantastic race and runners will pass some of the best sights the City of London has to offer, including Buckingham Palace, St Paul’s Cathedral, and Nelson’s Column.
Please contact: richard.daglish@brittlebone.org to learn more.

The Brittle Bone Society team have been in London for the last few days to attend important meetings with key stakeholders. Here’s an update on what we’ve been up to:
• Sat down with Nexus Underwriters to discuss both their fantastic fundraising and future plans for us as their Charity of the Year.
• Met with Lord Shinkwin in the House of Lords, a tireless campaigner for disability rights and a valued friend of the BBS, to update him on recent work and what we have planned f...or the future.
• Attended the Rare Bone Group Alliance meeting. This was promised at last year’s conference, and the leaders of different bone charities have now met to share expertise and experiences so that we can all better support our members.
• Participated in the Specialist Healthcare Alliance meeting. Chaired by Lord Sharkey, this session provides an invaluable space for charities to learn about recent developments both across healthcare and devolved governments, thereby ensuring we have the most up-to-date information when working for our supporters.
We’re now all back in Dundee and getting ready to use what we have learnt to support the OI Community in 2020!
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Meesha Patel was an active fundraiser for charity, a valued member of the OI community, and is still very missed today. To mark the tenth anniversary of her passing, Brittle Bone Society Vice-Chairman, John Phillips (seen here with Meesha’s father, Mr Maheshbhai Patel, and her brother, Jayesh), was honoured to accept a £5,000 donation from BAPS Charities at the beautiful Neasden Temple in London where Meesha volunteered as a member of the Youth Forum.

Merry Christmas to everyone in the BBS Family and the world-wide OI community

The BBS have had an amazing year, and all of the team would like to say thank you for helping us to support the OI community and raise awareness about the condition. We have lots planned for the new year, but for now please enjoy this fantastic film made by BBS member, Chris Lynch.
https://www.youtube.com/watch?v=gs8gvdF90 1U

The festive season is about loved ones more than anything else. As she prepares for her own Christmas break, read how Elaine and her family have been shaped by OI in the last of our guest blogs of 2019
https://brittlebone.org/elaine-corkery-gu est-blog-extended…/

We have had a fantastic response to our Adult services survey with a 182 replies so far. We would love to get 200 responses before 2020. If you haven't already completed this short survey please take a few minutes to have your say.
https://docs.google.com/…/1FAIpQLSf4Dn8 9tZObZ5cx6…/viewform…

BBS Member Chris Lynch recently enjoyed meeting HRH Prince Charles & Duchess of Cornwall Camilla on the red carpet for the World Premiere of 1917 in London, and mingled with stars of Hollywood and the big screen. Chris is seen here with Alex Pumfrey CEO of the Film & TV Charity who kindly supported funding for his new wheelchair and Chris wanted to say a big thankyou. We also want to thank Chris for producing some work for us . . to be revealed soon . . . .

Well done Monique. Happy to promote your passion for dance in this short film. Thanks for sharing.

It's that time of year when we are all dreading hitting the shops! You can read about Elaine's experiences of retail accessibility in the latest of our series of blogs. https://brittlebone.org/elaine-rush-guest -blog-retail-acce…/

Thank you for supporting The Brittle Bone Society on #GivingTuesday! And our thanks also to the amazing Sam Renke for leading our campaign on the Day.
Because of your generosity, we can continue to help change the lives of thousands of people living with OI. We could not do any of this without your generous support.

This giving Tuesday, we urge you to join the lovely Sam Renke and show your support for her and the 4000 people living with OI in the UK & Ireland. Imagine if 4000 people donated just £5 each, that would see the BBS starting 2020 with a huge £20k. It couldn’t be simpler just click to donate and we will receive all payments directly. Please donate, like and share to help us, support you, this #GIVINGTUESDAY

Brittle Bone Society are knocked out by this latest news report by Alice - an amazing ambassador for OI. Well done and thankyou for raising awareness of Osteogenesis Imperfecta. We appreciate Alice for shining a light on brittle bones, and her proud mammy Jacky . . . We are all very proud of your contribution!

BBS attended the Quality of Life event in Amsterdam see pictured Chair of our medical advisory Board Dr Kassim Javaid. An update will be in our Christmas newsletter which is in production. Read our report - here https://brittlebone.org/…/quality-of-li fe-4-oi-internation…/

Only 4 days to Black Friday and with everyone Christmas shopping we wanted to remind you how easy it is to support the Brittle Bone Society when shopping online, with Amazon Smile being just one way you can support us as you shop online. Simply visit https://smile.amazon.co.uk/ and select the Brittle Bone Society as your chosen charity. Happy shopping, Happy customers, Happy BBS!!

It's that time of the week again, when we urge you to complete our short survey if you haven't already done so !! Please spare us just a few minutes of your time this weekend to have your say. We only need 40 more responses!! https://docs.google.com/…/1FAIpQLSf4Dn8 9tZObZ5cx6…/viewform…