A landmark dedicated research fund for synovial sarcoma was launched in London last evening by families affected by the rare cancer. It marks a crucial milestone in the fight against a disease that currently claims the lives of 50% of patients within five years of diagnosis.
The Synovial Sarcoma Fund, launched on the evening of the first-ever Synovial Sarcoma Day (February 17th), represents an unprecedented collaboration between Sarcoma UK and families affected by the disease, aiming to accelerate research into earlier diagnosis and better treatments of the rare cancer.
Synovial sarcoma was in the news recently when Loose Women’s Charlene White spoke about her devastation at losing her friend Darrell McDonald to synovial sarcoma. Darrell was involved in the setting up of this fund but died last month, before it was launched. Tributes were paid to him last evening.
Kate Quillin, Research Manager at Sarcoma UK, highlighted the fund’s transformative potential: “This fund has real potential to accelerate research into synovial sarcoma. We’re now starting to see some promising developments worldwide for these patients, but funding has often been the barrier. Supporting researchers who specifically work on synovial sarcoma will hopefully bring us closer to better treatments in the long run.”
The initiative has united families across the country, including Kate Munday Hoctor from Herne Bay Kent, who established the fund in tribute to her daughter, Amber. “We’ve come together with Sarcoma UK and other families and individuals affected by synovial sarcoma so that we can raise funds and progress treatment and research in this disease,” said Kate, whose daughter was diagnosed at age eight after presenting with a lump in the bottom of her right foot. She said, “We’d visited the GP for a period of over 12 months, and Amber had initially been misdiagnosed with a ganglion cyst. It was only after her first surgery that we discovered what she had was, in fact, a soft tissue cancer: synovial sarcoma. Only 50% of individuals survive from five years or more post synovial sarcoma diagnosis. And so, we felt we had to make a change.”
Sam and Elliott Sheppard, who lost their daughter Isobel to synovial sarcoma, shared their vision for the fund: ” Our daughter Isobel was diagnosed at the age of 12. She went through several rounds of treatment, including amputation, and unfortunately relapsed some two years later. She ultimately lost her life to it in December of 2022. Our hope for the fund is that we can raise a significant amount of money that will help to find better treatments for synovial sarcoma and ultimately find a cure.
Richard Davidson, Chief Executive of Sarcoma UK, emphasised the fund’s significance: “The Synovial Sarcoma Fund represents a crucial moment for patients and families affected by this less common cancer. It gives us a dedicated route to raise vital funds for research and brings together like-minded individuals who are all keen to drive change. With 79 patients diagnosed in England every year, each with very complex treatment needs, we need this dedicated fund more than ever.”
The urgency of this initiative is underscored by Jenny Owen, who recently lost her son Oliver to the disease: ” My son, Oliver, was diagnosed on October 22 after a visit to his physio pushed us to get an MRI. Various doctors and orthopaedics didn’t have a clue what this lump was in his glute. He went through chemo, proton beam and major surgery. Getting back to his beloved football six weeks later after being told he would never play again. Unfortunately, Oliver relapsed six months later. His strength and fitness kept him going both physically and mentally, but we sadly lost him in September of last year. Oliver was constantly defying all odds, and this fund will hopefully help others to find better treatments and, ultimately, a cure. The odds have got to be better.”
James Gough was diagnosed in March 2023 with a synovial sarcoma in his right calf. He said, “It came completely out of nowhere, thought I had a kind of sports injury, and ignored it for 18 months. Classic me! I eventually went to my GP, got a referral and a few scans later and an excision biopsy later, I got a phone call to come in early from my results and now… I’m a statistic.”
Chris Metcalfe, whose brother Rob died just over three years after his diagnosis, shared this sentiment: “My hope for the Synovial Sarcoma Fund is that we could provide a better future for people to have better outcomes with synovial sarcoma.”
As one of the more common sarcoma subtypes, with 79 patients diagnosed in England annually, synovial sarcoma presents a unique opportunity for research breakthrough. “We now have real opportunities to make progress, but we need the resources to do it,” noted Kate Quillin. “And that’s why we’re really delighted that the Synovial Sarcoma Fund is helping to make that happen.”