Our Autumn e-zine covers key updates, news, and events that took place between July – September. Key highlights from this bumper issue include:

• Interesting news updates
• Upcoming events
• Stories from our fundraisers

and much more! You can view the full e-zine here.

The Brittle Bone Society (BBS) is committed to raising awareness and understanding of Osteogenesis Imperfecta (OI) through our ongoing outreach programme aimed at universities across the UK. This initiative, titled “What You Need to Know About My OI”, provides students, particularly those entering healthcare professions, with valuable insights into what life is like living with OI.

On Thursday 6th November, Fiona and Coreen had the pleasure of visiting Glasgow Caledonian University, where they met with 4th-year Occupational Therapy students.

Coreen delivered an overview of the work carried out by the Brittle Bone Society, highlighting the vital role we play in supporting individuals and families affected by Osteogenesis Imperfecta (OI). Fiona then shared her personal experiences of living with OI, offering valuable insight into the realities of life with a rare condition.

The session sparked meaningful conversations and raised awareness among future healthcare professionals – an important step toward creating a more inclusive and informed approach to healthcare.

A huge thank you to Glasgow Caledonian University for welcoming us and to all the students for their enthusiasm and thoughtful questions. Together, we’re building a stronger understanding of OI and the difference occupational therapy can make.

We are keen to develop this outreach work in 2026. If you have any links with local universities in your area, drop us an email via admin@brittlebone.org – we are always keen to spread awareness about OI as part of our ‘What You Need to Know About my OI’ Project!

Obituary:

Nabil Shaban (1953 – 2025)

It is with sadness that The BBS heard the news of the death of Nabs Sil (Nabil Shaban)

on 18 October 2025.

Nabil helped launch what would become the Disability Arts Movement.

He leaves behind his beloved wife Marcela, a vast circle of friends and comrades, and an artistic and political legacy that will echo for generations.

Former Trustee of the BBS Simon Mckeown, has written a moving tribute and you can read Simon’s tribute HERE.

“We shared not only the same condition, brittle bones (osteogenesis imperfecta), but also a similar humour and refusal to accept limitation. He confirmed what I likewise knew and had grown up with: disability need not be a barrier to creativity or defiance. Nabs demonstrated to me, and countless others, what was possible”.

 

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Images 1-4 show Nabil acting in part of a digital project entitled Motion Disabled. © Simon Mckeown with permission to use.

Our Autumn e-zine covers key updates, news, and events that took place between July – September. Key highlights from this bumper issue include:

• An overview of our 2025 Annual Conference and AGM
• Interesting news updates
• Upcoming events
• Stories from our fundraisers

and much more! You can view the full e-zine here.

Congratulations to Matthew Gleaves – BEM Honours for a Champion On and Off the Range

 

We’re thrilled to share the fantastic news that Matthew Gleaves, benchrest air rifle shooting champion, has been awarded the British Empire Medal (BEM) — a truly well-deserved recognition of both his sporting excellence and his tireless advocacy.

Matthew has worked passionately to encourage more disabled people to take up benchrest air rifle shooting, a sport in which disabled and non-disabled shooters compete on equal footing. His dedication has opened doors for many, and his example continues to inspire.

Matthew’s journey into the sport began during the COVID-19 lockdown, when he built an outdoor range at home for his daughter. What started as a family project soon became a competitive pursuit, and Matthew quickly rose through the ranks. He’s held the top ranking for three consecutive years and was crowned British Benchrest Air Rifle Champion in 2023.

In response to receiving the King’s honour, Matthew said modestly, “Just to let you know as one of the OI Clan that I had a bit of luck.” But we, and so many others, know it’s much more than luck — it’s talent, perseverance, and a deep commitment to the sport and its community.

From all of us at BBS, we offer our warmest congratulations to Matthew and his family. We couldn’t be prouder — it’s such an honour, and one that couldn’t have gone to a more deserving person.

Matthew recently shared more about his journey and the sport in a blog post for us — you can click here to read it

VERY well done, Matthew!

Do you have a passion for health and social care services ?

 

Nice are currently recruiting for 2 new lay members to join the board to bring a perspective of patients, people who use services, and carers to selection and routing of topics.

In summary the role will entail:

Activity description: The National Institute for Health and Care Excellence (NICE) produces guidance on the most effective ways to prevent, diagnose and treat diseases and ill health, and provide social care support. Its’s important that NICE prioritises those areas of guidance development that will have greatest impact on the health care system. To help do this NICE prioritisation Board was set up to decide whether to select topics for guidance development.  For more information including videos explaining NICE’s approach to prioritising topics, please visit their prioritising our guidance topics webpage

Skills & experience needed: NICE are looking for 2 people to join the board to bring a perspective of patients, people and carers to selection and routing of topics.  They wont have personal knowledge or experience of every topic this committee looks at, but they should have a broad understanding of the issues to patients and their families or unpaid carers.

Time commitment: Meetings will take place every 2 weeks and last for 2 hours.  You will be expected to read the meeting papers in advance, which takes up to 2 hours.

Key dates: The closing date is 15 June 2025.  Interviews will take place on Friday 27 June, and the first meeting will take place 21 July, 10 – 12pm.  Location:  Meetings will be online via web conferencing software.

Payment: You will receive £150 for each meeting

How to apply: Please visit the NICE recruitment page for all recruitment documents and online application form.  The closing date is Sunday 15 June 2025.

For further details contact Mark Rasburn – email: mark.rasburn@nice.org.uk

 

The Brittle Bone Society (BBS) are looking for a full-time staff member to join our team at our HQ in Dundee, someone who is enthusiastic, willing to learn and able to multi-task as the role will be varied.

The key areas of focus for this role are:

• Liaising with and supporting fundraisers
• Office administrative duties
• Meeting and events support
• Assisting with Grant applications

The successful candidate will have a good knowledge of general office procedures, excellent IT and literacy skills and the ability to accurately manage databases and spreadsheets.

Fundraising and Admin Assistant JOB DESCRIPTION

Closing Date Friday 23rd May

Application via CV and covering letter  – to be submitted to coreen@brittlebone.org

Our Spring E-Zine covers key updates, news, and events that took place between January – March. Key highlights from this bumper issue include:

• An insight into the array of events that the BBS has attended in the past three months
• Exciting research updates
• Stories from our fundraisers
• Trustee, MAB and SAB updates

You can read the full e-zine here.

On the 18th and 21st of March, we welcomed Dental students from the University of Dundee to the BBS headquarters In line with the BBS’ initiative ‘What you need to know about my OI’. As part of a two day visit, the students had the opportunity to chat with BBS members Jamie Abbott, Mark Ross, David Queen and Trustee Yvonne Grant about their experiences with dental care and having OI on the first day and then returned their second day to present resources they had created from what they had learnt.

The students, as part of the Year 4 undergraduate curriculum cover a unit which involves community engagement where they meet with different groups to better understand different social, general and oral health needs of individuals. We were delighted to be able to share specific aspects of OI with the group.