I never imagined I’d start a charity! I had a satisfying career in the field of information technology, and life was going well for me. But being diagnosed with lung cancer at the age of 40, as a healthy, non-smoking woman changed everything. It shook my world and opened my eyes to how overlooked this rare subtype of lung cancer truly is.
In the UK, ROS1+ cancer is underfunded and rarely understood even within the medical community. Treatment options are limited. Awareness is almost non-existent. And yet, the people living with this cancer are vibrant, resilient, and deserving of hope, care, and a future.
That’s why I founded ROS1ders UK Charity to break the silence surrounding this illness, to create a supportive community, and to demand research, better treatments, and equal attention for ROS1+ patients across the UK.
Thank you for visiting our website. Simply by being here, you’re helping us move one step closer to change.
Hi, I'm Julia. I was diagnosed with stage iv NSCLC in 2016 and diagnosed as ROS1in 2018. I was 45 and a mum to three young children. They are now thriving young adults and I'm extremely fortunate to have seen them grow. I live a normal live and hospital visits are much further apart as I'm a tki and have minimal impact on my family life.
We've had a few ups and downs like last year when the cancer spread to the leptomeningeal area of the brain but we got through it together and thankfully my oncologist got me lorlatinib on compassionate grounds.
Going forward with ROS1ders, I hope we can achieve more awareness, give support and get more treatment options for future ROS1ders.
As a retired consultant ophthalmologist working in the NHS for over 35 years, I have overseen many service developments and have extensive experience in team leadership. As head of school for ophthalmic training in the West Midlands and regional advisor for the Royal College of Ophthalmologists for more than 10 years, I also have insight and experience in regional and national agendas.
These skills I would now like to use to build ROS1ders UK.
Past voluntary roles:
Treasurer and President of Midland Ophthalmological Society; and Trustee for Warwickshire Vision Services
Current voluntary roles:
Member of parish finance committee, Olton Friary Church, Solihull; and School Governor – Our Lady of Compassion and St John the Baptist Primary Schools, Solihull.
Dr. Shah is a thoracic medical oncologist practicing in Kent and London.
He has been intimately involved in clinical trials over his career and is an early adopter and champion for liquid and tissue genomics in lung systemic therapy.
As a steering committee member of BTOG, he is extensively involved in the organization and delivery of events at a national level and has recently taken the role of vice chair. As an active member of IASLC, he supported the communications committee.
He is a clinical advisor to the UK patient support/advocacy groups “EGFR Lung Cancer UK,” “UKALK+,” and recently “ROS1ders UK.”
Dr Qamar Ghafoor qualified from the University of Birmingham in 2002. He trained within the West Midlands and was appointed as Consultant Clinical Oncologist at University Hospital Birmingham in 2011. He is the current Service Lead for oncology in Birmingham.
Dr Ghafoor is a director of Maggie’s, a cancer support charity.
He developed the 4D and Stereotactic lung cancer radiotherapy service in Birmingham, having spent time training for this in the USA and Italy. He implemented the Cyberknife Lung Cancer service in Birmingham, and has the most experience in treating lung cancers with Cyberknife in the UK. He has significant expertise in concurrent chemoradiotherapy with curative intent, and helped develop a prehabilitation clinic for lung cancer patients in Birmingham.
Dr Ghafoor has significant expertise in using immunotherapy, targeted treatments and chemotherapy.
He is the principal investigator for a number of National Cancer Trials, and is at the forefront for new cancer therapies. He has published widely in peer reviewed journals, in addition to presenting at International Conferences.
