Jon Organ is an ambassador for the Throat Cancer Foundation who came through his gruelling treatment and has undergone a full laryngectomy. Despite this body changing surgery, he is determined to make a difference in the lives of those who have gone through similar experiences. It has been those very experiences which have both driven Jon to create a support network but also become a major patient advocate for several medical health companies and after treatment organisations. Here is what he has been doing and got coming up.
On Friday, 6th June, he will be presenting to students from Michigan State University at 12 Bedford Square in London. This marks his second year delivering this talk; his 2023 presentation inspired several students to pursue careers as speech and language therapists.
Jon’s advocacy work extends through his leadership of “Life After Lary” and “Life After Trachy,” two support initiatives set up by Jon for individuals who have undergone life-altering airway surgeries. These communities now include around 2,000 members, and their website sees over 1,000 visits each month. Jon and his team travel across the UK to organise meetups with patients and their families, while also hosting monthly Zoom meetings to provide ongoing support.
In addition to his advocacy, Jon continues his professional work as an Equality, Diversity and Inclusion (EDI) and race inclusion teacher and advisor. He teaches two days a week and serves on the boards of two schools with high percentages of pupils for whom English is an additional language, playing a key role in shaping the future of inner London education.
Jon was recently elected as a governor for The Royal Marsden NHS Foundation Trust, representing the areas of Chelsea, Kensington, Sutton, and Merton. The appointment followed a competitive ballot, and he now serves on the hospital’s governing body. In addition to this role, Jon contributes in a paid capacity to The Royal Marsden’s biomedical cancer research panel, as well as working on panels focused on precision therapeutics and the effects of cancer treatments. He also sits on the Trust’s staff EDI steering panel, helping to guide future policy.
For the past nine months, Jon has been closely involved with the North Thames Genomic Medicine Panel at Great Ormond Street Hospital. Following the announcement of renewed funding for a further five years, Jon has recently been appointed Chair of the panel.
Starting 1st June, Jon will take on a new post with the University of Birmingham, serving on the Patient Advisory Panel for Cancer Research UK’s clinical trials. He will also be contributing to research into upright radiotherapy with the University of Sheffield.
Jon is also a lay specialist with the National Institute for Health and Care Excellence (NICE), where he sits on two panels focused on robotic-assisted surgery.
A seasoned and in-demand speaker, Jon presents regularly at a wide range of venues across the country. His next major engagement was at the 80th anniversary celebrations of the Royal College of Speech and Language Therapists at Southwark Cathedral, where he has been invited as a guest speaker. The following week, he will speak at the UK Imaging and Oncology Congress in Liverpool, a three-day event aimed at medical professionals. Jon will be taking centre stage — exactly where he feels most at home.
Despite his full schedule, Jon carefully selects which engagements to accept, taking on roughly 25% of the invitations he receives. In June alone, he will spend just eight nights sleeping in his own bed, with the rest of the month spent travelling. As he notes, hotels are soulless places — but the work is worth it.
Alongside his formal roles, Jon continues to contribute to EDI and healthcare advisory panels across the country, remaining a steadfast and passionate voice for patients, equality, and better outcomes in cancer care.
