Welcome to our latest newsletter! We’re delighted to share a fresh roundup of what the Brittle Bone Society has been working on over the past few weeks. Inside, you’ll find updates on our ongoing projects, new initiatives, and the meaningful progress we’re making to support the Osteogenesis Imperfecta community.

 

Previous newsletters

February 2026

January 2026

Brittle Bone Society Collaborates with LAMDA on ‘Hospital of No Surprises’ Project

 

Brittle Bone Society members and staff spent time this week working with postgraduate students from the London Academy of Music and Dramatic Art (LAMDA), continuing our collaboration on the research project which we have been supporting called Hospital of No Surprises. Building on the valuable feedback received after last year’s live performance at our Annual Conference in Dundee, this year’s programme gave students deeper insight through conversations with surgeons, parents, and members of the OI community.

At the start of the week, CEO Patricia caught up online with Bethany McShepherd – head of Innovation at LAMDA and the project directors to support planning and direction. Trustees Thines Ganeshamoorthy and Joanna Cannon joined the students online to share their lived experiences—offering perspectives on life with OI and on parenting a child with the condition. Member and artist Simon Mckeown also spoke to the group, introducing the Social Model of Disability and discussing how it shapes his creative practice.

Students also heard from an orthopaedic surgeon and a paediatrician from Great Ormond Street Hospital, helping them build a well‑rounded understanding of OI and disability. Later in the week, Coreen our Support Development Officer travelled to meet students in London during rehearsals, joined by member and student music composer Will Cannon, who hopes to collaborate closely with the LAMDA cohort throughout the project.

The students fully embraced the subject matter, engaging thoughtfully with OI and disability more broadly to ensure these insights inform their scriptwriting and performances.

The Brittle Bone Society (BBS) was delighted to participate in this important event at the House of Lords, supported by Baroness Margaret Curran and chaired by Lord Shinkwin alongside Luke Murphy MP.

Our delegation brought together a strong group of representatives from across the OI community. In attendance were Vice Chair John Phillips, CEO Patricia Osborne, and leading adult OI clinicians and Chairs of both our Medical Advisory Board (MAB) and Scientific Advisory Board (SAB), Professor Kassim Javaid (Oxford) and Professor Richard Keen (RNOH, London). Representing paediatric services were Dr Paul Arundel, Head of the Highly Specialised Service at Sheffield Children’s Hospital, and Dr Catherine DeVile, Head of OI service at Great Ormond Street Hospital. Also in attendance was industry representative Wills Hughes Wilson.

Also part of our delegation were BBS champions Steve Edney BEM and his son Max, along with Monique Jarrett – both of whom delivered powerful, personal testimonies that emphasised the real‑world impact of gaps in OI services. Unfortunately, one of our representatives, Fiona Holmes, was unable to attend due to unexpected travel issues.
Throughout the session, we engaged in a robust and constructive discussion on the persistent inequalities in care experienced by people living with Osteogenesis Imperfecta (OI). We highlighted the urgent need for improvements within the framework of the UK Rare Disease Plan and called for meaningful, high‑level engagement at Ministerial level to explore tangible solutions.

We encourage everyone to watch this space for next steps.

Wheelchair users sought to create national council that will shape the future of wheelchair provision in the UK

The Wheelchair Alliance is calling on wheelchair users in the UK to join The Wheelchair Collective – the first national council of wheelchair users.

Here at Brittle Bone Society (BBS), we are proud to support the Wheelchair Alliance on its search for wheelchair users to join The Wheelchair Collective – the first national council of wheelchair users.

As a member you’ll be able to influence how wheelchair services are designed, delivered and improved.

The initiative will give wheelchair users with lived experience the power to influence how wheelchair services are designed, delivered and improved.

Recruitment for the voluntary regional representatives is now underway in the following areas:

• East of England
• London
• Midlands
• North East and Yorkshire
• North West
• South East
• South West
• Northern Ireland
• Wales
• Scotland

In addition, The Wheelchair Collective will also appoint a Youth Leader and Chair.

For more information about The Wheelchair Collective, and to apply to be a council member, visit www.wheelchair-alliance.co.uk/wheelchaircollective

The closing date for applications in all areas will close on Friday 6^th February.

On 21st January, the Brittle Bone Society was delighted to visit the University of Stirling for an important awareness‑raising session with students from the university’s Paramedic Society. The session was led by long‑standing BBS supporter and advocate Jamie, who generously shared his personal experiences of living with Osteogenesis Imperfecta (OI).

Jamie spoke candidly about the day‑to‑day realities of OI, offering students invaluable insight into the condition from the perspective of someone with lived experience. His talk highlighted the challenges people with OI may encounter in healthcare settings, as well as the practical ways future paramedics can provide safe, confident, and compassionate support. The students engaged enthusiastically, asking thoughtful questions and deepening their understanding of how best to care for individuals with OI in emergency situations.

Alongside Jamie, our Support Development Officer, Coreen, delivered an update on the vital work the Brittle Bone Society is undertaking across the UK and Ireland. She spoke about our ongoing support for individuals and families, recent developments in resources and services, and the charity’s commitment to improving awareness and understanding of OI among healthcare professionals.

The visit was a fantastic opportunity to strengthen connections with future paramedics and ensure that knowledge of OI continues to grow within frontline healthcare education. We are grateful to the University of Stirling Paramedic Society for welcoming us and look forward to future collaborations that help improve outcomes for the OI community.

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”.

 

---

 

Image data

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.