Our journey so far
OcuMel UK was founded by Jo Gumbs and Kathryn Curtis in 2011. Both had fathers with ocular melanoma and were shocked by the lack of information and support available, particularly when their Dads’ disease spread to other organs (known as metastatic disease). They decided to form a charity to disseminate the most up-to-date information, encourage best practice amongst healthcare professionals, and most of all, to alleviate the isolation felt by patients and family alike.
In September 2011, we held our first annual conference and around 45 people attended the meeting, including patients, family members and healthcare professionals. After the main meeting, a consensus forum of doctors and patient representatives came together to discuss improving the pathways for patients. This led to the formation of the guideline development group, chaired by Dr Paul Nathan, which created NICE accredited guidelines for uveal melanoma.
Since our inaugural conference we have gone on to hold a further 4 national conferences and 2 regional meetings. Our helpline has supported everyone from newly diagnosed patients to the recently bereaved and we have produced a leaflet which is available at all three English eye centres. We now have three part-time employees, which enables us to do more than ever before.
The future is looking bright for OcuMel UK, so please join us as we seek to raise the profile of this rare cancer and continue to improve the lives of patients and family members across the UK.