Brittle Bone Society (BBS) Scottish Parliament reception event (OI Awareness)
23rd May 2023 at the Scottish Parliament, Edinburgh 6 to 8 pm
The BBS secured sponsorship from the local constituency MSP to support this event at the Scottish Parliament. The initial project commenced 1 year ago; seeking greater awareness of OI and calling for the month of May to be recognized. Generally supporting the needs of the OI community. We encouraged our members to write to their elected representatives to bring their attention to the OI community. At this planned event we presented the results of our patient charter highlighting the shortfalls in patient care.
We asked members to get in touch with their elected reps to make them aware of the event and encourage them to attend. The host, MSP Bob Doris also fostered support from (the house) elected members to attend.
OI army of ambassadors
All the individuals and their close relatives involved in ‘the BBS year long campaign’ and who feature on our literature about it were invited to attend. Shani Dhanda, Monique Jarrett, Yvonne Grant, Eva Kelly and her mum Silean, Lucy MacConnell and her mum Dr. Niamh MacConnell, Kieran Dube and mum Rachel Dube, Kat Watkins, Max Edney and dad Steve Edney, Richard Toner, Amna Hammad and more!!!
Other OI ambassadors who previously helped us in other campaigns by giving talks and presentations representing the Charity were invited, which included representatives of the Charity’s Trustee board, BBS medical advisory board and scientific advisory board representation. Key BBS supporters, healthcare professionals either involved or interested in our work and other NHS personnel and sponsors. Various funders and friends from the wider rare bone disease network. e.g. HPP, XLH, Fibrous Dysplasia, were also invited to attend. The aim of the evening was to raise awareness of OI and foster greater support for care in rare bone diseases.
We had an impressive line up of speakers, such as Host MSP Mr Bob Doris, CEO Patricia Osborne, Vice Chairman and Trustee Mr John Phillips, Professor Stuart Ralston – member of our Scientific Advisory Board and Laura Pilkington (young member, advocate and Disability Equality Lead within the Scottish Student Sport Equality Steering Group.).
Whats on the Agenda
Welcome address from MSP about the charity’s standing in the community and the hopes to raise more awareness (with input about the UK Rare Disease Plan – Scottish slant). We addressed our important work to develop care pathways referencing to any network care work BBS have contributed to. We also made reference to published papers we have achieved eg. Impact of Covid on the OI community and gave updates on new treatments/exciting prospects including research in OI care as well as a talk from Ms Pilkington on her own OI Journey.
Reflecting on the Event: BBS Goes to Holyrood & Getting in the Mood for Conference
BBS staff and trustees made their way to Edinburgh to visit the Scottish Parliament on Tuesday 23rd May for their highly anticipated ‘OI CAN’ Awareness Event.
The evening event was held in the formal Holyrood Room, with sponsorship from Mr Bob Doris MSP, who is convenor of the cross party working group on rare and undiagnosed conditions. We were delighted to have senior members of the Scottish Government attending, including Minister Jenni Minto, for Public Health, Sport & Wellbeing, Joe Fitzpatrick, Minister for local Government Empowerment and planning and other MSP’s. Our guest list of BBS members, healthcare professionals, academics, funders and sponsors was extensive. We had a packed and very happy room on the night!
The meeting featured an overview of our year long campaign delivered by our CEO Patricia, with talks from Professor Ralston who gave an update on the TOPAZ trial and research at the BBS, Ms Laura Pilkington who gave a passionate overview on her journey in swimming/sport, Mr Alasdair Bachell, University of Dundee recapped on his progress with the History Bones Archive project. The outright highlight for most of us in the room – was the Poetry Recital by Trustee Yvonne Grant (‘School Worries’ written by the late Margaret Grant) and one (by unknown) on issues around access, beautifully delivered with NO notes by young Mila Perry. It was a perfect end to a marvelous night.
Vice chairman John Phillips hosted the evening and trustee Margaret Grant offered up a vote of thanks to all concerned. Ordinary members we spoke to said how much they enjoyed the event and it that it genuinely put them in the mood for Conference.
Sign the BBS Charter
There is still time to sign the #OICANMayCampaign charter! You can sign the charter here.