Brittle Bone Society Event in Parliament | 13 June 2023
Brittle Bone Society attended the Houses of Parliament in London 13th of June bringing their year long OI CAN campaign to Westminster. The event was sponsored by the Rt Hon Stewart Hosie MP, constituency MP for Dundee East and SNP Treasury spokesperson. The OI community gathered on the buildings’ Terrace Pavillion – on what was one of the sunniest days of the year, alongside the charity’s Trustees, staff and invited VIP guests from OI communities in Norway and the USA along with senior NHS Healthcare professionals for an afternoon of engaging talks and updates.
The campaign which was launched one year ago was calling for more awareness about OI during the month of May. The days’ event was to acknowledge those who signed the EDM (early day motion) and to signal the latest position on the campaign and update on vital work the charity are undertaking to formalise care pathways for adults with OI. They also took the opportunity to announce exciting developments with a new NHS RDCN (Rare disease care network) involving over 22 hospitals UK wide that will foster better understanding and exchange of knowledge with healthcare professionals around this rare condition affecting approximately 5,000 people in the UK today.
Charity CEO Patricia Osborne provided an outline of the Charity’s commitment to capture views and how this resulted in their People’s Charter and how this went on to shape the Charity’s next steps to achieve improved care. Vice Chairman John Phillips went on to host the day’s event introducing an impressive line up of contributors. Trustee Thines Ganeshamoorthy closed the days event with a vote of thanks.
Key attendees who fronted the OI CAN campaign from Scotland, England, Wales, Northern Ireland & the Republic of Ireland, lent their voice to the day representing the widest possible reach of the OI community and who featured on the Charity’s promotional literature. The impressive line up included the leading disability advocate and campaigner, Shani Dhanda, alongside Kieran Dube, Kat Watkins, Yvonne Grant, Monique Jarret, Max Edney and Amna Hammad-Saleem. Representing Ireland was Alice Boyd deputising for Lucy MacConnell.
The audience heard from prominent speakers in the NHS including Chairman of the Charity’s Scientific Advisory Board - Professor Richard Keen of the RNOH Hospital, London who discussed groundbreaking research currently happening in Osteogenesis Imperfecta, and his colleague Dr Judith Bubbear who shared the outline of the soon to be launched new Rare Disease Care Network (RDCN). The Charity will formally host this launch in central London in November 2023.
Other contributors included champion fundraiser for the BBS Mr Steve Edney, an exceptional ambassador for the BBS, who shared his experiences as a parent of a child with OI and his journey with BBS, from raising awareness, to fundraising and how he and his wife Leanne are focussed on helping the charity achieve better care for adults with OI. It’s worth highlighting that just days after this event, Steve Edney was awarded a BEM in the Kings Honours List, for his incredible achievements raising awareness and fundraising for the BBS Charity.
The concluding part of the days event involved poetry recitals from Trustee Yvonne Grant (written by the late Dr Margaret Grant MBE) written in 1974 and Max Edney with an offering penned some 50 years later . . . (Through the Eyes of a Child by Leanne Edney). Both poems were incredibly insightful and captivating.
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterised by fragile bones that break easily. It is also known as brittle bone disease. A person is born with this disorder and is affected throughout their lifetime.
OI is a disorder of collagen, a protein which forms the framework for the bone structure. In OI the collagen may be of poor quality, or there just may not be enough to support the mineral structure of the bones. This makes the bones weak and fragile and results in the bones being liable to fracture at any time, even without trauma.
OI is a rare condition and it is estimated that the number of people born with the condition is approximately 1 in every 15,000: that equates to around 5000 individuals in the UK living with OI.
Photographs from the Brittle Bone Society Event in Parliament, 13 June 2023:
Image 1: Stewart Hosie MP with Coreen Kelday (BBS Support Dev Officer, Carnoustie), Robert Gordon (Charity Treasurer, Carlisle), Yvonne Grant (Trustee, Dundee) and Patricia Osborne (CEO of Charity, Broughty Ferry)
Image 2: Stewart Hosie MP with Yvonne Grant (Trustee, Dundee)
Image 3: Coreen Coreen Kelday (Brittle Bone Society Support Dev Officer, Carnoustie), Caroline Chapman (Dundee), Patricia Osborne (CEO of Brittle Bone Society, Broughty Ferry) , Tracy Hart Smith (CEO of the OI Foundation in the USA) and Inger Margrethe Poulsen (Chair of Norwegian Society for OI)