“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.”
Nigel Short (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.”
Nicola’s son Kieran was diagnosed with Ewing’s sarcoma, aged 12.
“As the mother of a child diagnosed with Ewing’s sarcoma twice, I understand the importance of research.
My son Kieran was 12 when first diagnosed and we didn’t know about children getting bone cancer. We also found out that his treatment hadn’t changed for decades, which surprised me too. Kieran then required his leg amputated through the knee as the damage to the bone and soft tissue was too extensive. He then had a further 8 cycles of chemo before remission.
We didn’t expect the news that 19 months later the cancer would return and learnt that if it does come back again there is nothing they can do.
I don’t agree with this and believe that in the 21st century there should be more research into this disease as there have been no improvements for decades.
For this reason, I joined the Ewing’s Sarcoma Research Trust to raise funds and awareness to save Kieran and other children like him who are fighting this war.”
“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.”