"As an Ewing’s Sarcoma patient, I know how this cancer can shatter young people’s dreams and cause great hardship and suffering for all who know and care for that person.
I’ve been unfortunate enough to require treatment twice for this aggressive and life-threatening illness and have been disappointed to learn of a lack of funding from the public sector and leading pharmaceutical companies for research.
Whilst it has the potential to take lives, there is a real hope that a cure can be found, and therefore research has the potential to make huge strides in the quest to rid our teenagers and children of this cancer.
When I decided to create a charity to fund research, I wanted to make a difference; to young people who suffer from this cancer, their families, and all involved with treating the disease.
With your help, the Ewing’s Sarcoma Research Trust can help drive research to improve the survival prospects of Ewing’s patients.”
(Chair of Trustees)
Nigel is the father of Matt, our founding trustee.
“During Matt’s period of illness, my wife and I experienced first-hand the dedication and professionalism of those responsible for caring for youngsters with illnesses like Matt’s.
I was particularly impressed, and astonished, by the positive attitude displayed by the young people receiving treatment alongside Matt.
So many displayed such courage, determination and cheerfulness whilst undergoing time consuming and distressing treatment that I decided I too should do something to “make a difference” when Matt first shared his vision of establishing a charity.
It also provides me with an opportunity to work with and support my son in the realisation of Matt’s desire to make a significant contribution to fellow Ewing’s sufferers.”
“I have known Matt since he was born, and he has always approached life, and all it presents to him, with great focus, determination and energy.
We felt huge sadness that as a teenager he had to face the harsh treatments required to cure his Ewing’s Sarcoma.
It’s often difficult to know how to help at such a time. My instinct was to focus on Matt’s parents, Lesley and Nigel, and to visit them at UCLH every time he had a treatment.
What I hadn’t envisaged was that it would allow me to see into the world of UCLH’s adolescent unit and meet many special people.
When I left the hospital, I felt the sharp contrast of the busy world outside UCLH. Everyone was rushing around oblivious to the world above them where special people are faced with difficult decisions and gruelling treatments.
Matt’s courage and determination to launch the Ewing’s Sarcoma Research Trust, whilst recovering from his second illness, is inspirational.
I hope that my involvement with the Trust will give me the opportunity to make more people aware of this disease, and the difference supporting this Trust could make to so many people’s lives.”
Colin is Matt’s uncle.
“I’ve spent most of my working life as a civil servant and my experience as a counsellor has helped me develop an interest in how people change and grow throughout life.
I hope that the work of the Ewing’s Sarcoma Research Trust will help create new sources of funding to support much needed research into Ewing’s sarcoma and so bring fresh hope and the chance of a healthier life to those living with this cancer.
I also hope that everyone who either organises, undertakes or supports our fundraising activities will find it a life changing and life enhancing experience.”
“I have had the privilege of knowing Matt since his birth, as my children were born at the same time.
It was with such sadness that we learned of his diagnosis, and so difficult when my children were experiencing the excitement of learning to drive, while Matt was having to endure his amputation.
To see the determination of this young man prior to his surgery, researching prosthetics, drawings of proposed heel joints, all to present to his surgeon to try to save his leg, was the beginning of his commitment to research, promote awareness and give Ewing’s a much wider recognition. To be part of this charity is an honour.”
“In 2011 my daughter was diagnosed with Ewing’s sarcoma. She was five years old. Her treatment was long and hard and we thought it had gone well until it hadn’t.
It turned out that the cancer we thought had gone had in fact spread to the lungs. The odds of survival for Ewing’s sufferers at this stage drops dramatically. My daughter underwent the next round of treatment, then the next, and the next until in the end there was no treatment options left in the UK. There were however, treatment options in the US and we pursued them in the hope that a cure could be found.
By May 2015 our search for a cure had ended and my daughter died in my arms at our home in the early hours one morning, just as the dawn chorus sprung to life.
The work of the Ewing’s Sarcoma Research Trust gave us hope, both during the treatments for my daughter and after she has passed away. Through the ESRT we have supported much needed avenues of research at Leeds University Hospitals and at the Institute of Cancer Research at the Royal Marsden, supporting a PHD student investigate new pathways of treatment.
I was deeply grateful and humbled to be asked to join the board of Trustees and I feel privileged to be in a position, perhaps in a small way, to help move research towards a cure for a terrible disease that has cost many families, including my own, so much.”
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