Posted on Jul 28, 2021

 

Q: Name

Gareth Cumming, BA(Hons), CIMA Adv DIP MA

Q: Board Role designation (Trustee or Chairman, Secretary etc):

A: Trustee

Q: Your Relationship to BBS (your link/connection)

A: OI Type 3

Q: Have you ever been a Trustee for any other charity or similar? How many years have you been serving on the Board for BBS?

A: I have never been a trustee for any other charity. I have been a trustee since 2017

Q: Was there a moment when you decided that you wanted to support the work of the Brittle Bone Society or perhaps you were co-opted?

A: My family has always had close involvement in the BBS. I have attended almost every AGM and local conferences since I was born and have been involved in many fundraising and cheque presentation events. My dad was a trustee when I was growing up and I always believed that I would like to become a trustee when I was old enough and may even step into the position of treasurer when I finally qualify as an accountant.

Q: What do you enjoy most about serving on the Board?

A: I really enjoy making sure that the BBS is heading in the right direction with the best interests of people with OI. Also as the youngest trustee I have also enjoyed help shape the engagement of the younger members of the BBS through the vOIce events.

Q: What is the biggest challenge in your role?

A: I believe that most people will say that the biggest challenge in recent times has been the COVID crisis and the lockdowns. It was absolutely heart breaking to me to be part of the trustees who have decided to cancel 2 physical AGM/conferences, however it was made in the best interest of the delegates and has provided opportunities for people who haven’t or cannot physically attend, to attend virtually.

Q: How important do you see the role of the Brittle Bone Society in helping to raise awareness around OI? And including participation around research or anything else you feel pertinent.

A: The BBS is incredibly important to raise awareness around OI. There is still a lot of unknowns that surround OI both medically and in the general population so the hard work and support of the BBS has definitely helped it to improve, even in my life time.

Q: How would you like to see provisions for healthcare change in the future for people with rare bone conditions and specifically for OI?

A: There is a lot of healthcare provision for people with OI in childhood however there seems to be a lot less support for adults with OI. Therefore, better support in this area is incredibly important

Q: If there anything coming out of the Covid Pandemic that you feel will be learned positively to improve the quality of life for people with OI and their families?

A: I think one major positive that has come out of the pandemic is the popularity of video calling/conferencing. We have learned from last year’s AGM and vOIce events that new people attend due to not having to travel so far, costs involved from traveling or with physical injuries.

I believe that the BBS should have more virtual conferences and events and that going forward and only keep the main annual conferences as a physical event

Q: Do you have any unusual hobbies or interests that you would like to tell us about?

A: I have many hobbies including Baking, Pub Quizzing, Musicals, Swimming and Archery. However during lockdown I have learned a new hobby: Knitting. I have already had commissions from friends to make them scarfs and hats

Posted on Jul 28, 2021

 
Q: Name

A: Angie Stewart

Q: Board Role designation

A: Trustee

Q: Your link to the BBS

A: I have OI

Q: Have you ever been a Trustee for any other charity or similar? How many years have you been serving on the Board for BBS?

A: I have been a trustee for several local charities, all of which supported people who have a long-term condition to access and influence health and well-being projects in the North of England.

Many moons ago (when I was 16) I was an observer on our Trustee Board, on behalf of the Junior Brittle Bone Society. My Dad was the Vice Chairman, so I attended with him and was able to represent young members (although I couldn’t vote). I was hooked from that moment on…

Q: Was there a moment when you decided that you wanted to support the work of the Brittle Bone Society or perhaps you were co-opted?

A: My family became members when I was 3 years old. One of my earliest memories is being at the North East Branch meetings and there were people there just like me! My Mam knitted toys and Dad was recycled tin cans to raise funds for the BBS. It was our family thing! The conference has always been the high-light of our year!

Q: What do you enjoy most about serving on the Board?

A: I love being part of the growth of the organisation and making sure that it does what people affected by OI need it to do. We are a great team, with such a range of skills and expertise, which benefits the BBS hugely.  I have personally learned so much during the time I have been a Trustee.

Q: What is the biggest challenge in your role?

A: Probably developing a greater awareness of how the different medical specialisms can support a person who has OI. This has grown so much since I was a child, when the only specialist I saw was an Orthopaedic Surgeon. The BBS staff team are fantastic at explaining every aspect of an OI clinic to the Trustees. This means we can make informed decisions, about influencing and prioritise according to what members tell us they would like the BBS to focus on.

Q: How important do you see the role of the Brittle Bone Society in helping to raise awareness around OI? And including participation around research or anything else you feel pertinent.

A: The role of the BBS is invaluable. We are certain the knowlegde we share about the condition is up to date and accurate. We are independent, from all pharmaceutical companies, enabling all information about treatments we share to be impartial. We offer the voice of people affected by OI to practitioners who are shaping services and creating treatments, which supports involvement and co-production.

Q: How would you like to see provisions for healthcare change in the future for people with rare bone conditions and specifically for OI?

A: I would like to see a greater knowledge and awareness of OI and its impact in every hospital in the UK. Especially within maternity, paediatrics, and A&E. Where a local hospital does not have the specialisms needed for OI, I would like them to have connections with the specialist centres, which would be available for children and adults across the UK.

I would also like to see a greater awareness of OI across social care, so that practitioners know it can be a fluctuating condition according to fractures and fatigue.

Q: Is there anything coming out of the Covid Pandemic that you feel will be learned positively to improve the quality of life for people with OI and their families?

A: The ability to have virtual clinics where appropriate, to avoid time off work and school, car parking and long journeys to local or national hospitals. However there needs to be opportunity to choose, whether a virtual or physical face to face appointment works best.

Q: Do you have any unusual hobbies or interests that you would like to tell us about?

A: I started to grow my own vegetables in my garden during 2020 and absolutely love it! I enjoy creating vegan meals with my home-grown vegetables. I have the cutest chihuahua called Annie McFluff who also enjoys eating the carrots from my garden.

Posted on Jul 22, 2021

 
Q: Name, qualifications and awards 

A: Professor Nick Bishop,

MB ChB MRCP(UK) MD FRCPCH, ECTS Boonen Award 2017, ICCBH Slemenda Award 2019

Q: Board Role designation

A: Trustee

Q: Your link to the BBS

A: Paediatrician leading an OI service

Q: Have you ever been a Trustee for any other charity or similar? How many years have you been serving on the Board for BBS?

A: I’ve been a Trustee at BBS for 5 years (I think!).  I’ve also been a trustee of the Children’s Hospital Charity in Sheffield for 16 years.

Q: Was there a moment when you decided that you wanted to support the work of the Brittle Bone Society or perhaps you were co-opted?

A: Really started to get fully involved with BBS in the mid 2000’s as our service in Sheffield grew and developed

Q: What do you enjoy most about serving on the Board?

A: Feeling that we are all working towards a common aim of improving the lives and health of those who have OI

Q: What is the biggest challenge in your role?

A: Making sure I make time to do the role well

Q: How important do you see the role of the Brittle Bone Society in helping to raise awareness around OI? And including participation around research or anything else you feel pertinent.

A: This is a really important role – the BBS is seen as very strong in terms of advocating for those with OI through the broad range of activities that it undertakes, especially in relation to making sure that those in positions of responsibility within the health service are aware and engaged with the communities needs and priorities.  It would be great to do more in the research area, but that depends on funds being available -there is no shortage of research ideas!

Q: How would you like to see provisions for healthcare change in the future for people with rare bone conditions and specifically for OI?

A: We should continue to press for a rare bone disease network that covers both adults and children; children’s services are good, but they can always be better.

Q: Is there anything coming out of the Covid Pandemic that you feel will be learned positively to improve the quality of life for people with OI and their families?

A: The ease of setting up virtual meetings can really help with getting people’s views and input around research ideas – instead of having all the hassle of travelling and setting up meeting rooms etc, we can do a lot on line. It’s been fun doing that with a young adult group recently, even though the study didn’t get funded

Q: Do you have any unusual hobbies or interests that you would like to tell us about?

A: I’m trying to learn to use a scythe.  Unfortunately I wasn’t very careful when sharpening it recently…

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