Supporting research into ultra-rare brain tumours

Great Manchester 10K · 18 May 2025 · Start fundraising for this event
When you are born in Manchester, you innately become incredibly proud to be a Mancunian.
There have been two distinctly unique moments in my life where I have felt immensely proud to be from Manchester. Both of which have taken place in hospitals.
1) In February 1995, when my mother delivered me into this world at Hope Hospital; now known as "Salford Royal".
2) In April 2023, when I first began to benefit from the excellent work the University of Manchester & the Manchester Academic Health Science Centre do through their collaboration with the Skull Base Foundation. Working to support developments in the care of patients with skull base disease through education, science & research.
In March 2023, I was told something life-changing. I was told I had a "fast growing mass in my sinus passage that was invading space at the base of my skull".
In layman terms, I had a cancerous growth occurring within my skull. The cancer - initially thought to have been an 'olfactory neuroblastoma' but later determined to be a 'sinonasal undifferentiated carcinoma' ("SNUC") - was determined to have a cell duplication rate of 100% and is regarded as "ultra rare" (i.e. it has a very low incidence rate, has occurred in an unusual location and isn't commonly detected / researched / treated), particularly for my age group.
In the 25-months following that initial diagnosis, I have been the subject of countless meetings & consultations, had dozens of MRI & CT scans, undergone two major craniotomies, had 13-weeks of daily photon beam radiotherapy, endured 10 cycles of chemotherapy and spent days deeply researching this complicated world of science and disease.
Due to the rarity of the cancer, much of the treatment I have endured is based on discovery science and experimental medicine. This requires extensive collaboration and research across multiple expert fields; including neurosurgery to skull-based tumours, neurosurgical oncology, ENT surgery, targeted therapy, genomics, chemotherapy and radiotherapy.
Thankfully, I was born in Manchester. The home of incredible research centres like the Geoffrey Jefferson Brain Research Centre.
In Manchester, this Centre treats the most brain tumour patients in the UK, and it is the only centre in the Country to be able to offer all modalities of treatment, including proton beam therapy. The GJBR Centre is fundamental in providing research, support and care for people diagnosed with brain tumours. All of which I have been able to benefit from over the last 2 years.
Sadly however, there is a significant funding shortfall for these important centres. Due to the incidence rate of "rare cancers", they are understudied and, when compared to other "more common" cancers, the cost-to-benefit analysis carried out when determining which cancer trial to commit funding to, results in low justification case in providing resource funding to support trial studies in ultra rare cancers. This creates a circular issue that ultimately results in much poorer prognosis for patients like me.
The Manchester 10km run, taking place on May 18th, is the first (of many) sponsored events I am undertaking after completing my last round of chemotherapy on April 14th, 2025.
I intend on using my time with good health to raise as much money as possible for charities and research centres that have played a pivotal role in determining the course of treatment I have completed; in the hope that the funds will be beneficial for assisting other unfortunate people that are burdened with a disease similar to the one I hope to be rid of.
Any support you can provide would be greatly appreciated.
Sincerely,
Conor
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