BBS Project ‘What you need to know about My OI’ took another step forward, when Support Development Officer, Coreen along with member Sharon Murphy visited a group of 4th year Occupational Therapy Students at Glasgow Caledonian University on the 16th Nov. The students are currently working towards a module covering Occupational Participation through the Lifespan.
As part of this module the University invited services users with lived experience to speak to students to help them gain insight into the experience of living with a long-term or life-long condition, and the BBS were of course delighted to be part of this discussion. Sharon spoke about her experiences of living with OI, and Coreen spoke from the charity perspective.
The types of questions/topics covered were:
- How does the does this condition present and symptoms
- The impact the condition has on daily life (for example, being able to move around, getting washed and dressed, preparing meals, managing housework, managing family life/responsibilities, impact on employment or education, socialising, engaging with your hobbies, accessing the community, ability to travel / go on holiday)
- Government initiatives / policies that have impact on living with a long-term condition (e.g. self-directed support, free personal care, support to access employment etc.)
- Any contact with health and social care services / professionals (good and bad) and support provided – in particular by OT’s
BBS want to thank members who provided information via our online Survey which we published prior to attending the visit asking the OI community to share their experiences. This provided us with useful additional information which we were able to discuss with the students. It’s not too late to still complete this form as there will be further input required in the future.
The BBS are proud to be sponsoring the “Touch a Life Award” for a nursing student in memory of the Late Dr Margaret Grant MBE for the second year.
This award aims to recognise a nursing student who demonstrates the heart of nursing through the impact they have on either an individual, a family or a community.
Trustees and staff are grateful to have the opportunity again this year, to remember our late founding member by recognising the work of hard-working individuals in the nursing profession!
Trustee Yvonne Grant attended to present this special award to student nurse Tyler Kirkham the 2023 Winner. The Awards Ceremony was hosted by Programme Lead, Patricia Kydd. Also attending the event were Charity CEO Patricia Osborne and Support Development Officer Coreen Kelday.
Margaret Grant would approve this lasting legacy in a profession she cared about here in Dundee – the city of her birth and at the seat of learning at the School of Health Sciences, University of Dundee. The University who so kindly bestowed her honorary doctorate.
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 2023 Annual Conference and AGM
- Exciting research updates
- Stories from our fundraisers
- Trustee and staff updates
and much more! You can view the full e-zine here.
The BBS are delighted to be hosting an event to celebrate the launch for the NHS Adult Rare Bone Network, a new Rare Disease Collaborative Network (RDCN)! We will be welcoming healthcare professionals and industry experts to an afternoon of informative talks, networking and insights into the RDCN.
The Adult Rare Bone Network is another step in innovating care for those with rare bone diseases. The event will celebrate launch of this significant step in rare bone healthcare. There will be speakers discussing a variety of elements regarding the Rare Disease Collaborative Network, including the Lord Kevin Shinkwin, a leading advocate in the disability sector, and Professor Kassim Javaid, Chairman of the Charity’s Medical Advisory Board. You can view the full agenda here.
OI has been listed on Genomics England’s published list of conditions that will be screened for as part of the Newborn Genomes Programme research study (“the Generation Study”).
The list of conditions that will be screened for as part of the research study was published recently by Genomics England. The list is available via their website. You can also find out more information here.
Leading NHS Geneticist and member of the BBS Medical Advisory Board, Dr Meena Balasubramanian, said “I think it is good and is a positive step but then looking at the list, it has Col1A1/A2/ IFITM5 and none of the other more severe forms [of OI], which would be useful to pick up. But then again those may be picked up through antenatal scans anyway.”
“It is very interesting to see the power of genome sequencing and harnessing the advances in genomic technologies to inform management of children born with Osteogenesis Imperfecta, long before they sustain a fracture and diagnostic odyssey that many families suffer from.”
“But, also being realistic saying ‘early diagnosis in the newborn period may come with its own challenges about knowing what the course of the condition might be and the uncertainty in these situations’ would be good.”
Our June e-zine covers key updates, news, and events that took place between April – June. Key highlights from this bumper issue include:
- BBS Supporter, Steve Edney, receiving a BEM.
- Attending Holyrood and Westminster Parliament.
- CEO Patricia Osborne attending the NHS 4 Centre Meeting at Birmingham Children’s Hospital.
- Support Development Officer, Coreen Kelday, and Layperson on our Scientific Advisory Board, Penny Clapcott, attending the Pain Conference run by OIFE.
- New staff members joining the team in addition to a new layperson on our Medical Advisory Board.
- Scientific research updates.
You can view our full e-zine 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 advocacy@rdi.ie.
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.