In November 2006, Keith and Kay Sudbury’s world fell apart when their beloved son Adrian, then 25, was diagnosed with two types of leukaemia simultaneously. So rare was his diagnosis, he was thought to be the only person with the condition. After a stem cell transplant, one of Adrian’s leukaemia's returned and he sadly passed away in August 2008. After his diagnosis, it was his wish to create a campaign that would target 16-18 year olds in schools and colleges around the country and inform them about why and how to join the blood, stem cell and organ registers. It’s now nine years since his parents Kay and Keith co-founded Register & Be Lifesaver. They share with us its phenomenal success, their new charity and why it was important for them to carry it all on in Adrian’s memory.
Adrian, working at the Huddlesfield Examiner
Our world fell apart in November 2006 when our wonderful son Adrian Sudbury, a 25 year old journalist from Sheffield, was diagnosed with leukaemia. He had just begun an exciting new role as on the digital team at the Huddersfield Examiner.
In actual fact Adrian had two forms of leukaemia, Acute Myeloid (AML) and Chronic Myeloid (CML), a second type being really aggressive and complicated. Adrian’s only chance of survival was a stem cell transplant. He was lucky as to find a match from a 30-year-old German woman. Initially it was successful but then, unfortunately, the second and more aggressive type of leukaemia came back. Adrian died a year later in August 2008.
When Adrian was given his terminal diagnosis, he was determined to do two things. Firstly, he wanted to go out in, what he called ‘a blaze of glory’. And, boy, did he do this. He came home for his final few months and for a number of weeks we all partied big time and friends and family came to say goodbye to him. We ate lots and we certainly drank far too much. There was a lot of happiness in amongst the tears and the sadness. But, secondly, and more importantly, Adrian had a wish for every 16 to 18-year-old in the country to be made aware of blood, stem cell and organ donation. He wanted to bust many of the myths surrounding such donations and encourage people to join the register.
In actual fact Adrian had two forms of leukaemia, Acute Myeloid (AML) and Chronic Myeloid (CML), a second type being really aggressive and complicated. Adrian’s only chance of survival was a stem cell transplant. He was lucky as to find a match from a 30-year-old German woman. Initially it was successful but then, unfortunately, the second and more aggressive type of leukaemia came back. Adrian died a year later in August 2008.
When Adrian was given his terminal diagnosis, he was determined to do two things. Firstly, he wanted to go out in, what he called ‘a blaze of glory’. And, boy, did he do this. He came home for his final few months and for a number of weeks we all partied big time and friends and family came to say goodbye to him. We ate lots and we certainly drank far too much. There was a lot of happiness in amongst the tears and the sadness. But, secondly, and more importantly, Adrian had a wish for every 16 to 18-year-old in the country to be made aware of blood, stem cell and organ donation. He wanted to bust many of the myths surrounding such donations and encourage people to join the register.
Adrian taking his campaign, petition and vision to Parliament
During his illness Adrian also wrote a successful blog called ‘Baldy’s Blog’, which won national and international awards. He also had a very high profile media campaign called ‘Sign Up For Sudders’. During a six week period in which Adrian was very ill, he managed to visit 10 Downing Street and spent 45-minutes with the Prime Minister, Gordon Brown, who, along with Ed Balls, the Secretary for State for Education at the time, was so supportive of his goals. The government provided money for Register & Be a Lifesaver (R&Be), the organisation we created after Adrian’s death. Nine years on and R&Be has grown beyond all our dreams, with trained volunteer presenters going into schools and colleges to give inspirational talks and awareness raising presentations on how 16-18 year olds can become donors.
For a number of years R&Be worked in-house with Anthony Nolan. More recently, we have become so successful that we have now formed our own independent charity called ASSET – the Adrian Sudbury Schools Education Trust. We work in partnership with NHS Blood and Transplant and recruit for Anthony Nolan, either by directing students to join online or at recruitment events held at schools.
What R&Be does best, and what was Adrian’s wish, is maintain simplicity. Our trained presenters provide sixth form students with the facts the need about blood, stem cell and organ donation to make informed choices. We stress to everyone that it is absolutely fine to say no, but do so knowing the facts. Each presentation lasts around 45-minutes. The message is very powerful and students become very engaged and more often than not want to do something at the end of it. Many have gone on to join the Anthony Nolan stem cell register or enrolled to become blood donors or joined the organ register, nearly all so amazed to learn how easy it is to do so.
Adrian had a wish for every 16 to 18-year-old in the country to be made aware of blood, stem cell and organ donation and to encourage people to join the register
Another success of the R&Be campaign is returning to schools and colleges several days after a presentation with the swab kits to recruit new people to the stem cell register. We always stress the important of the commitment needed to register as we would not want anyone to join and back out later if found to be a match. We always build in a period of time for reflection and encourage students to speak with parents before they make any decisions. In some of these schools and colleges, R&Be is returning for the 9th successive year. You could say we have almost become part of the school culture.
There are some sensitive areas to the presentation and so we always ask that schools notify students or staff who may have suffered a bereavement or been touched by cancer and to give them the option not to attend. All of our presenters repeat this health warning at the start of each visit and give students the option to leave at any time.
Nine years on and R&Be has grown beyond all our dreams, with trained volunteer presenters going into schools and colleges to give inspirational talks and awareness raising presentations on how 16-18 year olds can become donors
For those interested in the work we do, R&Be has a number of fundamental core Principles;
- Each presentation requires 30 – 40 minutes
- We raise awareness about blood, stem cell and organ donation
- We always have a period of reflection before asking students to commit.
- We never pressurise any student into joining any of the registers.
So what, in numbers, has R&Be achieved since it started?
- 23,000 students have joined the stem cell/bone marrow register
- 7,500 students have joined the organ register
- 14,000 students have become new blood donors
- 82 students have been identified as matches for strangers and have donated either bone marrow or stem cells potentially saving 82 lives.
One of the R&Be presenters, Heather, receiving her award for her 100th presentation from co-founder Keith Sudbury
ASSET is a new charity and like most charities need to find money either through grants or donations. We are always looking for new volunteer presenters so please get in touch to find out more. Next year is the 10-year anniversary for R&Be. We are very proud of what we have achieved and hope to be able to continue our life-saving work into the future for both Adrian, and those in need.
If you are a school, collage, organisation or individual wishing to contact ASSET or know more about R&Be, please email enquiries@asset.uk.com
| Register and Be a Lifesaver leaflet |
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