Who we are
In early 2024, three Leiomyosarcoma patients met to discuss what we could do to improve the prospects for people affected by Leiomyosarcoma in the UK. They had very different experiences but agreed that there was a need for a charitable organisation focused only on the needs of Leiomyosarcoma patients.
Leiomyosarcoma Research UK was established as a Charitable Incorporated Organisation in October 2024. We are registered with the Charity Commission (ref: 1210455) and you can find our registration details here: Charity Commission Registration
We are run entirely by volunteers and have grown from a standing start to where we are today. We have brought together a network of sarcoma professionals to stimulate research projects and have already pledged funding to our first projects. We are excited by the opportunities and challenges which lie ahead for us.
Our vision
A world where people affected by Leiomyosarcoma in the UK can access the information, treatment, care and support they need.
Our Mission
To advance research into Leiomyosarcoma and improve patient pathways whilst supporting and informing patients and families affected by this rare cancer.
What we do:
- Improve awareness of Leiomyosarcoma.
- Drive the search for improved treatments and better standards of care.
- Find answers through stimulating, promoting, and supporting Leiomyosarcoma research.
- Provide information and support for those affected by Leiomyosarcoma.
Our values:
- We are determined
We are ambitious for change; we are clear about our priorities. - We are patient led
We put Leiomyosarcoma patients’ interests at the centre of what we do. Our trustees and volunteers have all had their lives affected by Leiomyosarcoma. - We are connected
We know our stuff, and we will always seek to know more. We create connections with and between organisations and individuals that can help us achieve our objectives.
Our team
Maisie England
Chair of Trustees
Maisie is experienced in her professional life in connecting researchers together on large international research programs. She was diagnosed with LMS in her bowel in 2023 and found the limited treatment and surveillance options disappointing. This has given Maisie the drive to find more solutions to cure LMS; she believes that research is the key to this success.
Julia Casimo
Trustee
Julia is an experienced chartered accountant, director and trustee. In her previous career she ran a successful accountancy firm in Liverpool. She was diagnosed with Uterine LMS ten years ago in 2016, retiring shortly after her diagnosis, having received a very dim initial prognosis. She continues to undergo treatment, and at the last count had undergone about 30 different interventions and treatments.
Colin Grandison
Trustee
Colin retired in 2019 having spent 44 years in Banking the last 10 years of which were as an auditor for Citibank in Canary Wharf. He was diagnosed with LMS in his upper right arm in early 2022 which was excised in May of the same year. He is currently under a regime of regular CT scans at Royal Marsden, London.
Leo Casimo
Fundraising lead
Leo is an experienced charity leader, having built his career in health and social charities/not for profits. He leads our fundraising team, coordinating and supporting our magnificent fund raisers.
Katie Nicholls
Volunteer Administrator
Katie is our volunteer administrator, bringing her experience from working in the NHS alongside a deeply personal connection to our cause, as her mum is living with leiomyosarcoma. She is the friendly face behind our email inbox and supports the team with fundraising administration.
Professor Ian Judson
Chair of the Pathfinder network
Professor Judson treated sarcoma patients for more than 20 years as head of the Sarcoma Unit at The Royal Marsden Hospital in London. He conducted many national and international clinical trials in this area. He was a founder member of the British Sarcoma Group, and President until 2015, in addition to other roles in the international sarcoma community. Following his retirement in 2016, he has continued his involvement in sarcoma research and has served as a trustee at Sarcoma UK and St Christopher’s Hospice.
Our logo’s story
LMS is a rare cancer. Rare means less research, fewer treatment options, limited knowledge even among doctors, and often a long search for information that barely exists. Progress is slow. For the people living with it and their families, the medical landscape can feel isolating, frozen, with nothing moving forward.
We chose a flower called the purple saxifrage to represent our charity because of how and where it grows. This small purple flower grows in the Arctic, one of the harshest places on earth. While everything around it is still frozen, it pushes up through the cracked ice and blooms – one of the first flowers of spring. That’s the kind of breakthrough we’re pushing for in research and treatment. The flower stands for what we believe, and what we’re fighting for: that even where the odds feel stacked, progress can still be made. We’re here to help make it happen.
Our huge thanks go to Mike Smith, a marketing and branding expert, whose creativity was vital to the development of our logo and to Adam Cardle the graphic designer who brought Mike’s ideas to life. Mike and Adam donated their time and expertise, and we are very grateful to them both.