An opportunity has arisen to join the Brittle Bone Society in a key role assisting with all Office Admin and Finance duties at our Head Office in Dundee.
Working as part of the Team, the post holder will offer administrative and finance support and contribute towards the aims and objectives of this National Charity supporting individuals living with Osteogenesis Imperfecta. The key areas of focus for this role are:
- Administrative support
- Meeting and events support
- Running fundraising reports
- Database entry
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.
Closing Date: Monday 3rd October
RIP Gareth Cumming
We are very sad to announce that Gareth Cumming has passed away aged 38. Gareth was a much loved member of the OI community. He had been a trustee of the Brittle Bone Society since 2017 and served on the Charity’s finance committee.
Gareth lived in Bristol and worked in finance for the Ministry of Defence.
He was keenly involved in every aspect of our Charity, attending all manner of events, most recently at the OI Can Event in Devon and our Mini Conference in London. He had a warm and friendly personality that drew people to him. He loved a quiz and was set to join us at our Sheffield Family Day event on the 3rd September.
Everyone that knew Gareth will be devastated by this. He will be sorely missed. Rest in peace Gareth.
Tales of the Unexpected Exhibition
Dundee University launched their “Tales of the Unexpected” Exhibition on Friday the 5th of August.
To mark Scotland’s Year of Stories the university invited artists, designers and creative writers to explore the stores and choose objects and archives which inspired and intrigued them. This exhibition showcases their responses and brings to life the tales that run through the collections in new and surprising ways.
Artist Susie Johnston was inspired by the BBS archives and chose to create a sculpture showcasing the wishbone, this was shown at the exhibition along with some of the charities archive. Trustee Yvonne Grant was there to see the big reveal!
The exhibition is shown in the Lamb Gallery at Dundee University and is open until 28th October. You can register for your tickets here.
Poppy Smith is currently Miss Belfast and is using her platform to raise awareness for OI and chosen the BBS as her beauty with a purpose charity.
Poppy told us that she chose the BBS as it is close to her heart and she was inspired by her little friend Eve. Poppy wants to use this Miss NI finalist beauty with a purpose opportunity to raise awareness of OI.
We wanted to thank Poppy for all her hard work so far and congratulate her on coming second in this Miss Northern Ireland competition.
The BBS are delighted to hear that Rare Disease Ireland are working on Care Pathways for OI. We are pleased to support this and will help contribute to this project in any way.
The priority is to identify people/families living with OI in Ireland that would be willing to review the draft pathway and provide feedback from their lived experience. The commitment is up to each individual, but it would be expected that no more than 5-6 hours over a 3-4 week period would be required.
The tasks may be outlined as follows:
1. Attend zoom meeting to hear background on project and learn what is being asked for. Any questions will be answered.
2. Read draft pathway (5-8 pages) as developed by clinical lead.
3. Add changes, recommendations, thoughts to the draft based upon lived experience of care in Ireland, including need to travel internationally for care as appropriate.
4. Return edited document to NRDO for review.
5. Follow-up meeting to review edited draft, as needed.
Following incorporation of lived experience changes, the draft pathway will be reviewed and amended as required by health professionals. Final version will be available to patient reps before going through approval processes with management/leadership within the HSE. Timing of this approval process is to be confirmed.
If you are interested please contact – Vicky McGrath at email@example.com.
The BBS are delighted to have an article published in the Society of Radiographers digital magazine, Synergy. CEO Patricia Osborne took the opportunity to discuss what radiographers need to know about Osteogenesis Imperfecta.
You can read the article here: Synergy Article
The article is another step in the BBS raising awareness of OI in the medical field. The magazine has a readership of 33,500.
We are delighted to announce that Scotmid has awarded the Brittle Bone Society a £500 Community Grant. This generous award will cover costs of the BBS Hospital Kids Packs. Thank you Scotmid!
Open Access Government Article
CEO of Brittle Bone Society Patricia Osborne, revisits aspects of the condition and shares what is known around current medical research and treatments. You can read the full article here.
OI 2022 Sheffield – 14th International Conference on Osteogenesis Imperfecta
The Brittle Bone Society , along with Osteogenesis Imperfecta Foundation and Osteogenesis Imperfecta Federation Europe are delighted to offer a number of awards to healthcare professionals and researchers working in lower middle-income countries to attend this scientific conference to be held in Sheffield, UK from the 30th Aug to 2nd Sep with all costs covered.
This international OI conference brings together scientists and clinicians from a wide range of disciplines, presenting updates on developments in scientific research, medical and surgical treatment options and discussions around topics such as rehabilitation, quality of life, pain, mental health and service development.
If you are a researcher and wish to apply please find out more information here.
NOMINATIONS NOW CLOSED
This Christmas, nominate your child for a BBS Christmas Selection Box!
Due to the success of last year’s Christmas Boxes, we are helping Ollie send out more this year. To nominate a child, fill out the form here.
Deadline for nominations is the 30th November.