Our brave, smart, and vivacious daughter Esme, passed away on Thursday 5 September 2024, from CIC DUX4 Sarcoma, a rare and aggressive form of cancer that primarily affects children and young people. She fought bravely for 12 months, with countless chemotherapy and radiotherapy sessions but this sarcoma type has no dedicated treatment.

She meant everything to us. We believe she was born to make an impact, and she still can. We have been working with Ross Okimoto, MD at the University of California San Francisco who specialises in finding treatments for the rarest of rare diseases. With only approximately 100 cases worldwide at any given time, this cancer is severely under-studied. We promised Esme we would continue the fight against this disease to ensure future patients have hope. We remain resolute in our aim to deliver on this commitment to Esme and assist where we can, until this aim is met.

Dr Ross Okimoto at UCSF is already making significant strides in the fight against CIC-DUX4 sarcoma. Dr Okimoto’s research focuses on repurposing existing and emerging treatments to target this specific sarcoma, which could potentially improve survival rates that are currently dismal compared to other cancers. Funding is crucial for this preclinical research, as it can help bridge the gap between laboratory discoveries and real-world treatments for young patients.

We have pledged to fund a dedicated laboratory researcher to work under Dr Okimoto for the next three years. We have financed the first year and the target amount will pay for a further two years. Your support can make a significant difference in advancing this vital research and bringing hope to affected families. Thank you.