The Bone Cancer Research Trust is a charity very personal to me as I was diagnosed with osteosarcoma in 2011 whilst at university in Leeds. Once returning to my studies after my treatment, I was keen to do some volunteering work to make up for lost time and to gain experience in a working environment. It just so happened that I found that the head office of the Bone Cancer Research Trust was in Leeds and only a bus ride away from my accommodation in Headingley - perfect!
I volunteer once a week at the office and do various jobs from making up fundraising packs to entering information on the database - every week I'm doing something different! I thoroughly enjoy my time at the office and find volunteering a very rewarding thing to do. The office is such a lovely environment to work in and I've made lots of new friends within the charity.
Alan is a valued Team Bones volunteer having contributed a great deal over the years as an IT advisor. We would not have been able to achieve what we have since 2006 without the help of people like Alan.
My wife Angela and I first became aware of the Bone Cancer Research Trust’s work during my son Alex’s battle with Osteosarcoma. He had a late diagnosis, and as a result the tumour had metastasised to his lungs. He endured four years of operations, chemotherapy, radiology, and alternative therapy with amazing bravery and positivity.
The BBC made an inspirational film about our son 'Alex: A Life Fast Forward'. It aimed to increase awareness of primary bone cancer in the hope that others would seek early diagnosis, and that outcomes might be improved. The film also showed that you can deal with misfortune and still enjoy your life. Alex sadly died in 2011, 5 days after his marriage to Ali and his 22nd birthday. Essentially, we want to pursue his wishes through the Bone Cancer Research Trust and are committed to finding a cure for a disease which affects people in such a cruel way.
I’ve been working as a volunteer for the Bone Cancer Research Trust since January 2014, half a day every week. I was inspired to do so after losing my husband to primary bone cancer. Also, I have two teenagers, and knowing how a large proportion of primary bone cancer sufferers are young, it has a double resonance for me to be involved.
I like volunteering every week, not only because it feels good to be able to help this brilliant cause but also because of the friendly staff working here. Their enthusiasm and energy are fantastic. I also love the fact that they know so many of our supporters personally, so there is a great sense of partnership.
Our very own Bridget Bones travels everywhere with us. You can never beat her on style and she is always ready to support our amazing fundraisers! Keep your eyes peeled for Bridget’s next appearance!
Challenge Events Fundraising Officer
I joined Team Bones in March 2015. I love everything events and fundraising. After graduating from the University of Chester with a degree in Geography and International development, I spent a year as a Student Fundraising Manager with a Children’s charity in London. I have been fundraising for charity for about 4 years now. I hope to bring my passion for fundraising to the Bone Cancer Research Trust and help develop our already amazing fundraising team. When I’m not at work you will catch me on my bike somewhere on the Yorkshire Dales.
I have worked as the Financial Accountant/Management Accountant for two multi-million manufacturing companies – the first in Scotland where I lived for 10 years and the second in Yorkshire. I am keen to experience a change of direction working for a charity and am very pleased to be part of Team Bones.
Debbie became involved with the Bone Cancer Research Trust following the sad passing of her daughter Stephanie in 2003 following a battle with osteosarcoma. To this present day, Stephanie’s family still support our work in Stephanie's memory.
Community Fundraising Officer
I joined Team Bones at the beginning of April 2014. I had been volunteering at the Bone Cancer Research Trust for 7 months before being offered a permanent role as part of Team Bones. Before that, I worked at various law firms as a legal secretary, specialising in employment law. My youngest son was diagnosed with Ewing sarcoma in November 2011. His diagnosis and our need for information and support is what brought me to the Bone Cancer Research Trust. I am absolutely thrilled to be a part of this wonderful charity.
Clerk to the Trustees
Jane sadly lost her son, Henry, to Osteosarcoma in 2010. She now runs a charity in his memory – Henry Dancer Days – which supports over 200 families of children with primary bone cancers and runs projects in the Great North Children’s Hospital in Newcastle to distract kids undergoing treatment whilst they are on the wards.
Founder and Trustee
My son, Anthony, was diagnosed with Osteosarcoma in April 2001. He started fundraising whilst going through his treatment. Sadly he lost his battle in October 2002. After his death, I continued with his fundraising and registered the Anthony Pilcher Bone Cancer Trust.
I am incredibly proud to also be a founder and active trustee of the Bone Cancer Research Trust. Anthony wanted to ensure that at some stage in the future, children and young adults would have earlier diagnosis, better drugs and improved survival rates. I will endeavour to carry out his wishes (and mine) to the best possible end.
Our daughter Emma was diagnosed with osteosarcoma in 2001. She spent two years fighting this terrible cancer. Talking with other parents we felt something needed to be done. We were told research had been very slow on primary bone cancer. Watching your child – how ever old – battle this unrelenting disease; amputation, chemotherapy, thoracotomy, it’s endless... it still comes back.
Why wouldn’t you want to help make a difference? After lots of talking, tears and research we all got together to push on with the road to research. Our involvement with the birth of this charity is something we felt we should do in the memory of Emma.
Research and Information Officer
With over 5 years’ experience working in a community pharmacy and a Masters degree in Oncology, I am keen to combine my academic knowledge of cancer with my passion for improving patient care and the information available for primary bone cancer patients. Joining the Bone Cancer Research Trust in its 10th birthday year is a fantastic opportunity, and I hope my role will allow me to play a part in progressing research in the primary bone cancer field!
Holly has been involved with the Bone Cancer Research Trust since 2010. Holly said: "I think BCRT is a very important charity to be supporting. More research needs to be done into primary bone cancer, so less people are affected by this terrible disease". We're thrilled to have Holly as a Team Bones Ambassador!
Founder and Trustee
I worked for the Virgin Group of Companies for some 31 years before deciding to take early retirement in June 2012 to spend more time with the family and concentrate on my charity activities.
My wife Marian and I had two children, Justin and Adam. In October 1994, Adam was diagnosed with Ewing Sarcoma and sadly passed away aged just 10 the following July. As there was nothing set up to support Ewing Sarcoma we established the Adam Dealey Foundation to raise funds for research and treatment of this terrible illness. We still hold annual events in his memory.
In 2004 I was approached by Ian Lewis to join with other families who had lost children to bone cancers. I am proud to have been there at the beginning of the Bone Cancer Research Trust, and am pleased to still be an active Trustee today.
Database, IT and Online Support Officer
I joined Team Bones in January 2015. After graduating from university in 2011, I worked for a county council, an MP and a small community charity in my hometown of Goole, working with databases of all shapes and sizes. I hope my role will be a key factor in the growth and development of this brilliant charity. Go Team Bones!
Head of Fundraising and Communications
Mat joined Team Bones in August 2015 having previously worked at Children with Cancer UK and the RSPCA. Mat shares a personal connection for our cause having lost his father at the age of 10 to Ewing sarcoma. His connection gives fuel to his passion every day in our fight to save life and limb.
Being there at the start of the charity made me very proud. I just wanted to put something back and help promote awareness of bone cancer. I was very much aware that things hadn’t changed much since my diagnosis in 1987 and this needed to change. Knowing that I have had some input in the success of the charity gives me great pleasure. Read Nick's story.
Communications and Stewardship Officer
Rosie joined the team in March 2016 after roles in the Science Museum Press Office and at Forster Communications. She is passionate about raising awareness of primary bone cancer in the press and amongst the public, and is keen to represent all the brilliant and varied work our staff, supporters and fundraisers do.
Challenge Events and Legacy Fundraising Officer
As its first-ever volunteer, the Bone Cancer Research Trust has been a part of my life since 2005. I cannot believe how far the charity has come since then, and it's just fantastic to see it go from strength to strength. I became the charity's first member of staff in 2007 and my role has evolved a great deal since then.
Initially I was doing everything including; managing the website, supporting our fundraisers, organising conferences, co-ordinating the research grants, to overseeing the campaign for NICE to approve the new osteosarcoma drug Mepact! These days my role is very much focussed on fundraising which is my absolute passion!
Supporter Care Officer
I joined Team Bones in April 2015. I began volunteering at a local hospice six years ago which led to a full-time permanent post in the fundraising department. I am extremely proud to now be part of the Bone Cancer Research Trust where I am really keen to put my experience and life skills to good use, ultimately increasing funding to pay for research into bone cancer.
I would love to be here and witness our research finding a cure – now that would be a day to remember. When I’m not working I love walking, gardening and can often be found up a ladder with a paintbrush in my hand.
We lost our daughter Jennifer to bone cancer in August 2003 after an 8 month battle. At that time there was very little support or contact with other affected families due to the rarity of this cancer. We felt very alone and helpless. The treatment available back in 2003 was very limited with a poor success rate, and we knew at that point that something had to be done to help others in the future to overcome this debilitating, horrendous cancer. After the passing of our daughter we were determined to help other families and patients in the future as we didn’t want others going through what we had. We were determined that our daughter’s passing was not going to be in vain.
Patricia had raised a considerable amount for primary bone cancer research over a number of years before the decision to establish the Bone Cancer Research Trust was made. She then joined in with the charity's founding and became one of the first trustees. Patricia’s daughter, Krystle, sadly passed away following a battle with Ewing sarcoma in 2002. Since Krystle’s passing, her family have made a huge contribution towards research into Ewing sarcoma.
Mike and Ros Francis
Founder and Former Clerk to the Trustees
Mike and Ros Francis played a large part in the start of the charity in their roles of a Founding Trustee and the first Chairman for five years (Mike) and Clerk to the Trustees for seven years (Ros). Their involvement began after losing their son Guy to osteosarcoma. Guy raised thousands of pounds specifically for research into bone cancer whilst in remission.
Professor Ian Lewis, who had treated him knew this and invited Mike and Ros with four other families in the same situation to consider starting a charity. Eighteen months later the Bone Cancer Research Trust became a registered charity. As parents, having experienced the agonies and joys of Guy’s cancer journey with him, Mike and Ros found it really positive to help establish the Bone Cancer Research Trust and look forward to seeing what the future holds for the charity...
Professor Rob Grimer
Rob was one of the founding Trustees of the Bone Cancer Research Trust and is Professor of Orthopaedic Oncology at the Royal Orthopaedic Hospital, Birmingham. He is one of the world's leading authorities on sarcoma, and has helped pioneer the use of extendable prostheses and the use of new surgical techniques such as irradiation and re-implantation of bone to treat sarcoma.
Teresa became involved with the Bone Cancer Research Trust when the Joseph Thompson Bone Cancer Trust became one of our founding members. Joseph sadly passed away in June 2003 at just 12 years old following a battle with osteosarcoma.
We are proud to have 2011 Cheltenham Cup Winner, Sam Waley-Cohen as one of our charity Ambassadors. He has personal experience of primary bone cancer, as sadly, his brother, Tom, died at the age of 20 after a 10 year battle with Ewing sarcoma. Sam said: “I am truly honoured to be supporting the Bone Cancer Research Trust. The charity has achieved so much in ten years, and I hope I can help raise awareness and support for such a great cause.
Professor Ian J. Lewis
Founder and Trustee
Ian was a Medical Director at Alder Hey Hospital in Liverpool, and previously a Consultant Paediatric Oncologist in Leeds from 1985. Ian also undertook a number of senior leadership roles including Deputy Medical Director; and Associate Medical Director for Children’s Strategy for NHS Yorkshire and Humber. He has a number of national roles and responsibilities. He is a member of both the Department of Health Payment by Results Clinical Advisory Group; and the National Clinical Advisory Team.
In January 2012, Ian was appointed as co-Chair of the National Children and Young People’s Healthcare Outcomes Forum with the remit to advise the Secretary of State about how to improve healthcare outcomes for children and young people. Ian remains active in clinical research, particularly clinical trials and health services research and he has a national and international reputation within paediatric and adolescent oncology.
Professor Donald Salter
I am Professor of Osteoarticular Pathology at the University of Edinburgh and am delighted to be a Trustee of the Bone Cancer Research Trust. I am the lead pathologist for the Scottish Sarcoma Network and am hopefully abreast of more recent developments in general cancer biology and treatment, many of which could be transferable to patients with bone cancer.
There are a lot of good things happening out there in the cancer field and we need to ensure that advances in diagnosis and treatments identified in the more common cancers that are applicable to patients with bone cancer are appropriately identified and implemented.
Becoming a trustee for a charity was not something I had thought much about until an email arrived one day from the Bone Cancer Research Trust seeking a new trustee. At this time I had been working with patients with primary bone cancer (PBC), managing both surgical and oncology support, and helping navigate the difficult treatment pathways and emotional rollercoaster that comes with fighting a diagnosis of PBC.
I joined the board of the Bone Cancer Research Trust in November 2014 and have become more and more involved with the ‘mechanics’ of the charity and its wonderful team. I moved to research in 2013, developing and executing a biobank sarcoma tumour tissue collection. In this time have developed further my understanding of this rarer cancer and how it ticks. Now retired, I want to continue working with the charity to drive forward the exciting research and bio-banking projects in progress. These are exciting times...
My daughter Claudia lost her battle with a Ewing sarcoma in June 2006, shortly after her 17th Birthday. I became involved with the Bone Cancer Research Trust after Claudia found details of a Golf Day, run by the Adam Dealey Foundation in support of primary bone cancer. After playing in the Golf Day to help raise funds and awareness, I volunteered to become a Trustee. My wife Gail and I have since attended Bone Cancer Research Trust conferences and supported the charity’s vital work wherever we can. I duly became a Trustee in late 2008.
My involvement with the Bone Cancer Research Trust stems from my son Alexander being diagnosed with Osteosarcoma in December 2005. Al embraced the treatment offered to him and with a very positive outlook went on his own cancer journey. Sadly the treatment and drugs available did not cure him and his journey ended in November 2007. He was 16 years old.
I have committed myself to support those who work to establish how the disease begins, why specific individuals develop the disease, promote earlier diagnosis and through research develop more robust and successful treatments. I do not want others in the future to suffer as Al did, or endure the loss we suffer as a family.
National Biobanking Facilitator
After doing my PhD and a short spell doing breast cancer research, which I loved, I soon realised that a career in a research laboratory was not for me. I then got involved in the world of biobanking at Newcastle University and haven’t looked back. I was involved in both local cancer biobank projects and also with the CCLG national biobank.
I really enjoy engaging with the clinical and research community, and with the public and patients to facilitate the collection of tissue samples for use in research. The Bone Cancer Research Trust National Biobank is an exciting project, and a great opportunity to really drive forward research in the field of primary bone cancer.
I became involved with BCRT after my youngest son died in
2007 as a result of a Ewing sarcoma that was misdiagnosed. I've raised funds
through sponsored runs, photographed some events and advised BCRT on marketing.
My previous work as a charity trustee and director of two national charities
has given me experience of providing services and information, creating policy,
campaigning and fundraising.
I became involved with BCRT after my youngest son died of
Ewing sarcoma in 2007. I contribute to the creation and maintenance of the
Information System in its various forms and co-wrote the GP on-line training
module. Previous work with Citizens' Advice included the creation of
information and training materials and the use of Plain English.
Patrick became a Founding Trustee of the Bone Cancer Research Trust following the sad passing of his son Christopher, who is pictured here, to osteosarcoma in 2004. Patrick was Deputy Chair of the Bone Cancer Research Trust for 12 months and acted as a Trustee for 8 years, making an invaluable contribution to the charity.
He and his family went on to establish the Christopher Hardman Osteosarcoma Research Fund (CHORF) and to raise a great deal of funds for and awareness of our work.
Challenge Events Fundraiser
I joined Team Bones in February 2017 with a background in marketing and events. My real passion lies in events and fundraising and having volunteered with a number of charities for several years I was keen to make the move from the commercial world to the third sector. I am excited by the prospect of working for such a fantastic charity and hope to make significant contributions to aid the growth and success of BCRT.
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