Lord Shinkwin’s Keynote Speech OI2022

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 The University of Dundee, 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 will be announced on the 18th November 2022.

 

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

 

Energy Costs if you live in Scotland

Welsh Government’s Fuel Support Scheme (Wales)

Cold Weather payments Northern Ireland

Information for the Republic of Ireland

 

Other Benefits and Financial Support

 

Please see our Financial support and benefits page for other benefits you may be entitled to.

 

 

Role

 

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.

 

Downloads

 

Job Description

Application Form

Equal Opportunities Form

 

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.

 

 

Gareth Cumming

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 advocacy@rdi.ie.

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!

 

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