We are very sad to announce that Helen Chappell has passed away very suddenly aged 49.
Helen was a much loved member of the OI community.
Helen was involved with the Brittle Bone Society since a very young child and featured, aged just 5, in the famous Magpie TV film when the charity won tremendous support for equipment from the Children’s TV Show.
Helen held the post of trustee of the Brittle Bone Society in 2012 and served the Charity in a number of activities and was also one of the original young people who pioneered vOIce.
Helen Chappell was a proud Yorkshire lass and lived in Leeds. She was keenly involved in Leeds Powerchair Football.
Helen was a warm and friendly person and just delighted in training her lovely new dog Barney.
Everyone who knew Helen will be shaken by this news. She will be sadly missed. Rest in peace Helen.
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.
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.
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.
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 Brittle Bone Society, Interloch Community Transport and Sheppey Matters are the first charities to be awarded funding from Motability’s portfolio of grant programmes specifically set up for other charities and organisations who support the transport needs of disabled people.
The new funding will buy wheelchairs and wheelchair accessories for the OI Community. Patricia Osborne, BBS CEO, said: “This amazing grant from Motability means we can get the right wheelchairs for individuals almost immediately! Our previous process worked, and we cannot thank all those Trusts enough, whom we worked with over many years to do that. However, the size of this Motability grant means we no longer need to apply to several Grant Givers for each individual application, while people waited for those last portions of funding to come through. This will radically speed up the process meaning they won’t have to wait.”
We are excited to work with Motability and continue to provide the right equipment and wheelchairs to the OI Community.
If you are needing equipment or a new wheelchair, you can find out how you can apply for a grant here.
The BBS are delighted to share Lord Shinkwin’s incredible keynote speech at OI2022.
OI International Scientific Conference 2022
During this years OI International Scientific Conference, held in Sheffield, Lord Shinkwin delivered the keynote speech. The BBS are delighted to be able to share this fantastic speech which was delivered at Sheffield Cathedral.
You can watch the full speech here.
We also have the transcript of the speech which you can download here: Lord Shinkwin Keynote Speech OI2022.
Touch a Life Award- University of Dundee
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.
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 chance to remember our late founding member by recognising the work of hard-working individuals in the nursing profession!
Margaret Grant would approve a 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.
This award will be complimentary to the Charity’s Research Grants Allocation which is open to all in the specialised field of OI.
Nominations were submitted in October and the Winner was announced on the 18th November 2022.
Trustee Yvonne Grant attended to present our very first of this special award to Nurse Rhian Jones, the 2022 Winner. Also attending the event were Charity CEO Patricia Osborne and Trustee Prof Margaret Smith, the former Dean of the Health Sciences School at Dundee University. Charity Chairman Elaine Healy said, she was “simply thrilled that we have finally put this in place”. Margaret’s name is truly living on and being remembered well!
Cost of Living Payment
The UK Government have introduced this scheme to support households across the UK who are struggling financially to cover the rise of cost of living.
You may be able to get payments to help with the cost of living if you’re getting certain benefits or tax credits. These payments will help with things like food, energy at home and fuel.
Guidance on getting extra payments to help with the cost of living, if you’re entitled to certain benefits or tax credits, can be found on the government website: https://www.gov.uk/guidance/cost-of-living-payment
If you live in Ireland see here: https://www.citizensinformation.ie/en/money_and_tax/cost_of_living/help_with_cost_of_living.html
You do not need to apply, you will be paid automatically
If you’re eligible, you’ll be paid automatically in the same way you usually get your benefit or tax credits. This includes if you’re found to be eligible for a Cost of Living Payment or a Disability Cost of Living Payment at a later date.
You could get up to 3 different types of payment depending on your circumstances on a particular date or during a particular period
Cost of Living Payment
For low-income benefits including Pension Credit, you should have already had your first payment of £326 by the end of July 2022.
The government has said households receiving DWP benefits will receive the second part of the £650 Cost of Living Payment from 8 November to 23 November. You can read more about this here.
£150 Disability Cost of Living Payment
Around six million people across the UK who receive disability benefits to receive a one-off payment of £150.
You’ll be paid the £150 Disability Cost of Living Payment automatically from 20 September 2022. Most people will receive their payment by the beginning of October 2022.
For more info on Cost of Living payments you can download this is to read document here.
If your payment does not arrive
Check your bank statement for a payment called ‘DWP Cost of Living’.
If you do not get a payment complete this form: https://secure.dwp.gov.uk/report-a-missing-cost-of-living-payment/welcome
Getting the Energy Bills Support Scheme discount
The Energy Bills Support Scheme provides a £400 non-repayable discount to eligible households to help with their energy bills over winter 2022 to 2023. All households with a domestic electricity connection in England, Scotland and Wales are eligible for the discount.
How it will be paid:
– Direct debit and credit customers will have the money credited to their energy account.
– Customers with pre-payment meters will have the money applied to their meter or be paid via a voucher.
You can find out more about this scheme here.
Priority Services Register (Energy)
You can sign up to a Priority Services Register (PSR) to receive extra help from your energy or water company. It’s free to sign up.
If you are over 66, ill or disabled, or have children living at home, ask your energy company if you can be added to their Priority Services Register.
This provides you with free extra services and may help protect you from disconnection if you struggle to pay your energy bills if your supplier has signed up to the Vulnerability Commitment.
You can find out more here
Other useful resources for support with Energy
Other Benefits and Financial Support
Please see our Financial support and benefits page for other benefits you may be entitled to.
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.
This is a full-time post, however part-time hours may be considered.
Closing Date: Friday 11th November
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.