World Book Day 7th March 2024

 

For World Book Day we want to celebrate the many contributions our members make to the OI community

 

Below you will find a list of books written by BBS members over the years:

Racing a Glass Baby by Grace Anighoro

My Perfect Sister by Penny Batchelor

No Horn Unicorn by Shani Dhanda

Gigi and the Giant Ladle by Leanne Edney

Simply Me by Emma Honca

But Really… Adventures with a difference by David King

You are the best thing since sliced bread by Sam Renke

Variety of Books by Nabil Shaban

Unbroken Spirit by Jason Titley

The Dream Machine by Argerie Tsmicialis

 

Note:  BBS has not been involved in the preparation of these books, and posting details on this page does not constitute an endorsement of their content by BBS.  The views expressed are solely those of their authors and the content of these books should not be used as a substitute for professional medical and/or welfare advice.   For BBS publications on OI, please see our Factsheets section.

Brittle Bone Society (BBS) were delighted to be invited to attend Braeview Academy in Dundee on Rare Disease Day to raise awareness of Osteogenesis Imperfecta as part of the YPI programme.

Trustee Yvonne Grant, and Support Development Officer Coreen held a stand as part of the charity fair where over 100 x 2^nd year pupils had the opportunity to talk local charities.

The Youth Philanthropy Initiative (YPI) provides an opportunity for school pupils to engage with their local community and to learn communication and research skills. They also have to present their findings to their year group at the end of the programme and the winning group receives a donation which can be given to their local charity.

We were delighted to participate and wish all the students luck with their presentations.

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 16^th 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 Brittle Bone Society Charity is delighted to announce that Steve Edney was awarded the British Empire Medal for his services to charity in the recent King’s Birthday Honours List 2023. Steve is a member of the Brittle Bone Society and an outstanding supporter of our work, raising over £100,000 in funds and working to raise awareness about the charity and the condition Osteogenesis Imperfecta (OI), with which his son Max, now 11, was born. The award recognises sustained commitment in support of charitable and/or voluntary activity.

The Brittle Bone Society is a national charity and Patricia Osborne, the CEO, said “Steve and his wife Leanne and wider family and network are by far our biggest fundraisers.”

Chairman of the BBS Charity Elaine Healey said “Steve is such a force for good. He is known for ‘living his purpose’ and the BBS has benefitted enormously from his fundraising and his example to others in supporting what we do. Steve and his family will never truly appreciate what an impact they have had on our work. I am extremely grateful for their support and kindness”

At an awareness raising event in the Houses of Parliament  on 13^th June, Steve described how he and Leanne learned about Max’s condition and how the family has lived with OI. Max recited a poem written by Leanne entitled ‘Through the eyes of a child’, which addresses the need to improve care for adults who live with OI.

The Brittle Bone Society works closely with the NHS, including its highly specialised centres in Sheffield, Birmingham, Bristol and London, by providing approved NHS information resources. The charity also raises money for mobility equipment/wheelchairs not available on the NHS, hosts educational and social events, advocates at policy level and funds important research.

Our current work includes helping to fund ‘care pathways’ for adults with OI and supporting a new NHS healthcare professional network of adult physicians who will foster greater knowledge and understanding of how best to care for and treat people with OI.

See Steve pictured below at our recent Westminster Parliamentary Event, with his son, Max.

 

 

We are very excited to announce that long-time BBS member, Steven Hastings, has had another article published in The Clydesider magazine!

Steven begins by describing how he typically likes to spend his day, which can involve visiting cafes, attending group sessions ran by Stepping Stones, and volunteering for the Clydesider magazine.

Steven then goes on to outline some of the accessibility issues that he can be forced to deal with, such as unsuitable disabled access facilities and obstructions that can make it difficult for him to use pathways.

The article is very powerful in highlighting issues surrounding disabled access. As Steven says, ‘there is still a lot to be done to make everywhere truly accessible for all.’

You can read Steven’s article here.

 

Coreen attended the first face to face POINT (Paediatric OI National Team) meeting since pre Covid Pandemic on the 9^th February in Birmingham.

There were Allied Healthcare professionals in attendance from GOSH, Sheffield, Birmingham, Bristol, Manchester and Cardiff Childrens Hospitals.

The healthcare professionals provided updates during the morning session on each of their centres and  various projects they are working on. Highlights and learning from recent medical conferences anyone had attended were discussed as well as poster presentations which had submitted on various research topics.

Coreen had an opportunity to provide updates on BBS activity covering topics such as Events, Care Pathways, Research and surveys, factsheets and new collaborations.

In the afternoon the various specialities divided up into breakout groups to discuss topics relevant to them.

If you want to find our more information about POINT see here

This event saw around 350 leading healthcare experts working in the field of Osteogenesis Imperfecta from around the globe transcend on Sheffield for this 4 day conference.  This International Conference takes place every 3 years and should have taken place in 2020, but was postponed due to the Covid Pandemic.

The Brittle Bone Society Team were delighted to be able to attend. CEO, Patricia Osborne shared a platform with Ingunn Westerheim, President of OIFE and CEO Tracy Hart from OIF.  All three gave an overview of the work of patient organisations and provided updates on their organisations. We also heard updates on the importance of the Impact Survey.  The BBS were also able to display their History Bones Popups as well as hosting an information stand.

 

Highlights

 

Day 1: we heard talks from Allied Healthcare Professionals from Sheffield and Bristol covering topics such as early life interventions, play and involvement with caregivers. The BBS also attended talks on registries, diagnostic pathways, gene therapy and more.

Day2: the morning session focused on Wellbeing in OI and included talks from Dr Rebecca Jones from Sheffield who discussed psychological well-being in children and young people. We also had a talk from Davina Ford and Dr Jennie Walsh who gave an overview of the Sheffield Transition process into Adult Services and Dr Ruth Kingshott shared resources on sleep.

Our CEO, Patricia met Dr Wolfgang Hogler, formerly of Birmingham Children’s Hospital, now working in Linz Austria. Dr Hogler was speaking to fellow clinicians about mutations, bone fragility and muscular hypotonia. We also heard talks from our MAB member Dr Meena Balasubramanian (Sheffield) who was covering bone, brain and beyond. Other talks included, surgery, post-surgery rehabilitation, cellular/tissue pathophysiology and more.

Day3: we attended the bench to bedside section; this was a session sharing updates on early phase studies through to integrated care. The holistic approach was delivered by Dr Paul Arundel (Sheffield). We also heard talks from Outi Maktie Helsinki on clinical management of rare bone diseases as well as lessons and synergies across diseases.

Day 4: There was a session of oral communications which consisted of short 10-minute presentations and an interesting overview of surgical management of skeletal dysplasia from Tae-Joon Cho (Seoul, Republic of Korea). We also heard an amazing talk from surgeon Mr Paul W Esposito USA, who was hugely respectful of the knowledge he gained from Sheffield in the treatment of OI. He also had huge respect for mums of OI children whom he said drove surgeons like him to do his best, and safely! This amazing surgeon who is set to retire from the orthopaedic world was given huge praise for his services to the OI Community!

There were also interesting updates on current and future research trials.  We heard about the latest news on Setrusumab and Topaz Trials.

 

Poster Presentations

 

Support Development Officer, Coreen Kelday was on hand to discuss the BBS Poster on Clinical Care during the Covid Pandemic and received good interest.

Sophie Barlow, Physiotherapist from the Royal National Orthopaedic Hospital, Stanmore was presenting a poster in relation to the BBS funded research project on percieved therapy needs of adults living with OI.

Chloe Morgan, Phd Student from Swansea University was sharing her BBS supported research project investigating the transition from paediatric to adult services.

 

Keynote Address

 

We also must mention we got the chance to see the magnificent Sheffield Cathedral where Lord Shinkwin delivered the keynote address.  You can watch Lord Shinkwin’s talk here.

 

The week was extremely beneficial in terms of learning and collaboration for both Healthcare Professionals and Patient Groups. A huge thank you to Professor Nick Bishop and the team at Sheffield for organising the incredible conference.

 

 

 

 

We were delighted to make contact with the local dental teaching hospital.  They invited us to give a presentation to master students, on the 23rd November,  about dental issues for people living with Osteogenesis Imperfecta and to look at possible research opportunities. CEO Patricia Osborne, Coreen Kelday, Support Development Officer and former Trustee and supporter Mark Ross gave a presentation about the work of the BBS and focussed on oral health concerns.

The Dental School have also asked us to talk at an online webinar which will take place in February 2023 (details to follow).

We have been liaisng with Dr Susan Parekh (Dentist) who serves on our MAB and together we will all be collaborating on important surveys for both children and adults.

We will be organising a visit to the Dundee Dental School and will share details soon if anybody would like to attend.

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.