Brittle Bone Society - Ezine December 2022

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An Update

From Brittle Bone Society

Bumper Issue Covering; September, October, November & December.

Merry Christmas!

As this will be the last e-zine we send out this year, Trustees and staff would like to wish everybody a happy, healthy Christmas, and a great New Year!

Massive Motability Wheelchair Grant Win for BBS

We are excited to announce that we have secured an outstanding three year funding grant with Motability! This will ensure we continue providing wheelchairs for our community – but allowing us to do so, faster!

This new Motability Grant active from 1 December 2022, means that Brittle Bone Society can meet the typical annual demand for suitable wheelchairs. CEO Patricia Osborne said “this will ensure people no longer need to endure delays and can get their wheelchair faster...” You can read the full article on our website.

If you are needing a new wheelchair, you can find out how to apply via our website.

Tatiana pictured with Paul from EMS Mobility, was delighted to receive her Power Assist Wheels from BBS (this wheelchair was provided prior to the Motability Grant Programme – and with thanks to numerous other funders).

Coming so soon after the awful news of losing Gareth Cumming, this year’s AGM was a difficult one for us all. The AGM confirmed the appointment of Liz Robertson as Trustee. Liz was co-opted as a Trustee by the board in August to ensure that BBS continued to have the minimum number of Trustees required by its constitution. Liz is a lawyer, head of pro bono at Jones Day in London. She has been a staunch supporter of the BBS for many years.

Other Trustees duly elected at our AGM alongside Liz, were Treasurer Robert Gordon, Professor Margaret Smith OBE and Thines Ganeshamoorthy. Chairman Elaine Healey congratulated all to the board at the October AGM and asked we all get behind our amazing Trustees.

At the November board meeting the Trustees co-opted Dom Hyams as a Trustee. Many of you already know Dom and will have seen first hand the level of his commitment to BBS. You can read his biog here.

Liz Robertson, Trustee elected 2022 & Dom Hyams, co-opted to BBS Trustee Board Nov 2022

Touch a Life Award, Honouring the late Dr Margaret Grant MBE.

University of Dundee, School of Health Sciences – Charity award that captures the Heart of Nursing.

University of Dundee held a ceremony, November, announcing the winner of the 2022 Award. Trustee Yvonne Grant attended to present our first of this special award to winner Rhian Jones. Also attending the event were Trustee, Prof Margaret Smith, the former Dean of the School of Health Sciences and CEO Patricia Osborne. Chairman Elaine Healy said, she was “simply thrilled that we have finally put this in place”. Margaret’s name is truly living on and being remembered well! You can read the full article on our website here.

Left to right, Trustee Professor Margaret Smith OBE, winner Rhian Jones and Trustee Yvonne Grant.

Gareth's Memorial Adventure Award 2023 –
An Opportunity to Shine!
Launching January 2023 offering Grants of £500-£1,000

This award will be for people with OI, open to ages of 18 and above. We are fortunate to have the full support of Gareth's family in this new project.

The grant will ensure that Gareth’s name and his zest for life will continue on in the OI community which he loved so much. Winners of the new grant will use it for travel, training or a project that will meet our criteria, in return we will invite the winner to share the positives in forthcoming communications.

Gareth Cumming

Research Grant Winners of 2022 Announced!

SAB Board met in October to decide which grants to award. Two projects were chosen.

Brain and Bone: Deciphering the connection [BRONE study]

This project is being carried out by researchers at the University of Sheffield, led by Dr Meena Balasubramanian, and is looking into genetic conditions where individuals can present with unexplained fractures.
You can find out more about this study via our website.

There is another project also approved subject to gaining full Ethics Approval – we will announce that as soon as we are able to.

These decisions reached were ratified by the Trustee Board 5 November. The SAB will meet again early 2023 and it's likely the next Grant Round will be launched March/April 2023. You will be able to read about the latest approved research projects on our website.

Other SAB Approved Research Projects

Strength Training Study: If you live in or around Regents Park area, London you may be interested in this 6 week training course. (There may be a possibility to do this virtually if you have the necessary equipment.) For more information head to our website.

BBS Dental Survey

The Brittle Bone Society have created a survey to ingather information in relation to current dental care experiences of the OI community in the UK and Ireland.

We would like to hear what issues individuals experience from accessing community care to receiving treatment at dental hospitals, and what the main areas of concern in relation to dental care are. If you have a spare 5 minutes, we would love to hear from you! You can find your survey here.

Our latest factsheets are now signed off and residing in our ever growing library of information for the OI community on our website.

You can view factsheets on pregnancy, Scoliosis and diagnosis on our website.

Independent Living Resources

We are pleased to announce that our new Independent Living Resources are now available on our website. Thanks to our working group who shared valuable information and experiences, we have complied 3 new factsheets and other useful links to help the OI community live independently. You can find the resources on our website.

OI2022 Sheffield International Conference ICCBH

We were delighted to attend this world renowned event. BBS CEO Patricia shared the stage with Ingunn Westerheim from OIFE, Tracy Hart-Smith - OIF and they each spoke about their respective organisations and their work, focusing on collaboration and friendship and co-operation.

BBS also published updates live from the event and captured a number of interesting interviews with a variety of medics. These are currently in production and will be available soon.

You can see our highlights of the OI2022 Conference on our website.

left to right, Ingunn from OIFE, Patricia BBS, and Tracy OIF.

Lord Kevin Shinkwin supporter and friend to the BBS, was also in attendance at the last night’s farewell conference dinner. His speech was extremely moving and all the healthcare professionals in attendance were very taken by his strong and meaningful testimony about the impact to him of medical skill/surgery that he himself had been fortunate to benefit from his former Doctor. The short film is fully captioned, you can watch here.

Left to right: Chair of BBS Scientific Advisory Board, Prof. Richard Keen, Lord Shinkwin and Patricia at Sheffield Conference 2022

Professor Nick Bishop Retirement (Sheffield Children's Hospital)

Formally retired from the NHS in the summer of 2022 – BBS took the opportunity to present a gift of a Quaiche and a Decanter inscribed with much love and affection from the OI Community. Prof Bishop was extremely touched by these gifts and offered his sincere thanks.

N.b. Prof Bishop will continue with his research one day per week and we are pleased he will remain on our Trustee Board. Prof Bishop has numerous other commitments he will maintain, and we hope he gets some time to relax.

OI Sheffield Family Fun Day August 2022

BBS welcomed so many new families to our relaxed family fun day. We had a blast with laughter yoga, games for the kids and lots of informal chit chat. People really warmed to the relaxed setting and a great day was had by all attending. Some of the youngsters made great new friends and we plan to host more fun days in the coming year. You can see the photo gallery on our website.

Families having a fun day with the BBS in Sheffield.

Society for Endocrinology Event Nov 2022

Coreen, our Support Development Officer attended the annual Society for Endocrinology conference in Harrogate to host an awareness stand for the benefit of healthcare professionals. There were over 1100 healthcare professionals in attendance.

Pictured left Becky Whitworth with Coreen our SDO at SoE Conference, Harrgoate

Listening to your Feedback- Kids Zone 2023

We are planning a Kids Zone/Cool Bones room for our next conference, Autumn 2023. This will be a quiet space for teenagers with some computer consoles, we are confident this is what the Cool Bones kids will really enjoy.

We also received welcome funding to support this from the Light Fund with our thanks!

Events 2023- Dates for your Calendar

All Ireland Mini Conference

The BBS are heading to Athlone, Co. Roscommon on the 25th February 2023.

You can register for this event via our website.

OICAN Outdoor Event

23rd May 2023, Lake District. We will be posting a registration link soon. Save the date!

More to be announced...

Dental School, Dundee – Reasons to smile, forging new partnerships!

We are delighted to have recently made contact with Dundee Dental School. They invited us to give a presentation to master students. Patricia, Coreen and former Trustee and supporter Mark Ross gave a presentation about our work and focussed on oral health concerns for the OI community.

The School of Dentistry, University of Dundee have asked us to help present an online webinar which we will be held in February 2023. We have been liaising with Dr Susan Parekh (Dentist) who serves on our MAB and together we will all be collaborating on important surveys for both children and adults. We will also be organising visits to the Dundee Dental School and will share details soon if anybody would like to attend.

Top Picture: Mark Ross, Former trustee, assisting BBS staff giving a presentation at the Dental School.

Bottom Picture:Niall McGoldrick Hon Consultant and Dr Heather Cassie, School of Dentistry Uni of Dundee with CEO Patricia Osborne & SDO Coreen Kelday

Our important work on care pathways is moving forward. We are working formally on this project with VMLYR health.

VMLYR will be project managing under the steer of our Chair of MAB Dr Javaid and BBS staff to ingather vital details to get this very important tool completed.

Chair of the BBS Medical Advisory Board, Assoc. Professor Kassim Javaid giving an update on Adult Pathways at the BBS Mini Conference in London, July 2022.

OIFE

Our SDO Coreen Kelday sits on the OIFE board as Treasurer. She travelled to Belgium in November for their first face to face meeting since the Covid pandemic. They are making their transition from the Netherlands to Belgium and welcoming new trustees to the board. You can get the latest on OIFE news via their website.

Ollie's Christmas Box Giveaway!

WOW… 100 Kids Christmas boxes in Santa’s bag on their way to your little cherubs! So happy that we can send this note of cheer to the children – sent with our very best wishes.

In the future, we would like to get these sponsored – just like our Kids Hospital Packs which are currently sponsored by SCOTMID. If you have any suggestions then do let us know. You can contact by email: admin@brittlebone.org.

#OICANMayCampaign

Launched February 2022, 216 signatures on our charter have been received with our thanks. If you haven't already, you can sign our charter here.

The BBS are taking our update on the campaign to Parliament. We will visit the Scottish Parliament in May and Westminster in June 2023. The events are sponsored by our MP Mr Chris Law and MSP Mr Joe Fitzpatrick.

To read more about the #OICANMayCampaign, head to our website.

Image from our #OICANMayCampaign

Welsh Parliament

We wanted to give a shout out to Kat Watkins who works as UNCRDP (Convention on the Rights of Persons with Disabilities) Development Officer for Disability Wales working with Education on getting the UNCRDP taught within the new curriculum for Wales.

Kat has also helped support BBS to get a motion laid down at the Senned, Wales by contacting Mike Hedges MS, to raise awareness of our OICAN May Campaign. We look forward to more activity there soon. Thanks Kat!

Kat Watkins at her recent Cardiff AGM in October

We Say Thanks and Good Luck to Richard!

Richard has been with the BBS since May, working remotely on various admin tasks. Richard had got in touch to ask if he might gain some work experience with us. We were able to arrange a period of paid work experience and we all really enjoyed working with him.

Richard said: “I have enjoyed working for the Brittle Bone Society over the last seven months learning how the charity operates behind the scenes including supporting people with OI and their families. I would like to thank my colleagues and trustees for work experience gained as an admin officer. This role has opened up more opportunities for me in the admin and business industry and for that I am grateful. I will continue supporting the Brittle Bone Society by attending conferences and workshops in 2023. Hope you have a wonderful Christmas and all the best in the New Year.”

Update from Comms Officer

Comms Officer Megan, wanted the chance to provide a short update on areas of her work around social media and accessibility- specifically "Alt Text."

Also referred to as an Alt Description or an Alt Attribute, Alt Text is critical for the disability community and for those with a visual impairment because it describes the function and appearance of a photo or graphic they cannot see.

Megan continued: - “We add this to as many of our posts as possible, however, Alt Text cannot be added to any of our scheduled posts. We facilitate this whenever we possibly can, and hopefully social media platforms will alter this function in the near future so that scheduled posts can include Alt Text.

Thanks for all your support – I also wanted to add that it means a lot when you like, share and support our communication messages!"

Its huge thanks to everyone who has been fundraising for us over the past few months. You can see all our fundraising stories via our website.

Well done to the TBAT team who did the Iron to Iron ride - a gruelling 300-mile route with over 16,000ft of uphill climbing and they completed it within 21 hours. The team also auctioned off their bikes.

They raised a whopping £2,776 + £628.75 in gift aid. Well done!

If you want to support the BBS, here are some really easy ways to donate:

Amazon Smile: By visiting Amazon Smile you can select the BBS as your charity and each time you make a purchase at Amazon, the BBS receives a donation at no additional cost to yourself.

Facebook Donate: Has now been successfully re- registered. A great way to easily support the BBS.

QR Code: we now have a QR code making it easy and simple to donate anytime/anywhere:

Copyright © 2019 Brittle Bone Society, All rights reserved.

Our mailing address is:
Brittle Bone Society,
30 Guthrie Street,
Dundee,
DD1 5BS

Tel: (+44)01382 204446 Email: admin@brittlebone.org

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Brittle Bone Society (BBS), a registered charity (SC050854) and a company limited by guarantee (SC677346), supporting the OI community throughout the United Kingdom and in Ireland.

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Brittle Bone Society · 30 Guthrie Street · Dundee, Tayside DD1 5BS · United Kingdom