My best friend of 35 years, Vanessa, was diagnosed with a rare form of non-small cell lung cancer (EGFR Exon 20 insertion mutation) July 2025. Despite several trips to the GP, opportunities to diagnose Vanessa earlier were unfortunately missed when she was initially wrongly diagnosed with asthma.

Vanessa was fit and well, running 2 or 3 times a week, regularly taking part in weekly parkruns, events and fundraising. If it wasn’t for her regular exercise and the parkrun community Vanessa wouldn’t have noticed an increase of breathlessness whilst running and revisited the GP to be reassessed and request a second opinion.

By the time the diagnostic testing was completed, and lung cancer was confirmed it had already spread significantly - to her lungs, liver, kidney, spine, lymph nodes, brain and meninges.

She underwent a course of chemotherapy in the summer 2025, showing positive results with tumour shrinkage and stabilising the existing disease; However, she then went on to a maintenance chemotherapy which unfortunately hasn’t worked and recent scans have shown further spread of disease.

Having discussed the remaining options with oncologists, NHS & privately, we are now looking at the best treatment option available in the UK, an immunotherapy drug (TKI) for Vanessa which currently is not funded by the NHS for the Exon 20 mutation.

To add complexity to Vanessa’s current situation her private healthcare insurance will not cover the cost of the treatment so we would like your help to try and alleviate some of the costs and financial burden required to receive this medication.

Vanessa will need to have treatment every week for the first four weeks, then every other week after that, but will also need to cover the cost of bloods and scans etc.

There are also future potential opportunities for additional treatments not yet approved or available on the NHS or through private healthcare providers to become available in the fulness of time.

Those of you that know Vanessa well, will know her courage and tenacious strength to fight this and to help buy additional time with her husband Paul, and sons Jacob (16) and Devon (13). Everyone will know her for her huge, beaming smile, big heart, drunken dancing and terrible singing (Sorry Ness!). It would be great to be able to see that perfect smile more often, and by helping with this fight you will be contributing to getting that fab smile back on her face more often and hopefully buying more time with the people that matter most to her.

If you can contribute, please know that every donation, no matter what the size, will make a real difference. Just as importantly, please share this appeal far and wide with everyone you know.

Vanessa is being supported through various different channels, within the NHS, private sector, organisations such as the Roy Castle Foundation (https://roycastle.org ), Kirkwood Hospice (https://thekirkwood.org.uk ) and from afar through the Exon 20 Group (https://exon20group.org ), which is an international group providing world class patient advocacy services and working to accelerate the drug pipeline for the EGFR Exon 20 mutation.

In the UK, around 23,900 women are diagnosed yearly, with incidence rates rising, narrowing the gap with men. A significant percentage occurs in non-smokers, particularly among women.

Your love, support, and generosity will help Vanessa, Paul, Jacob and Devon continue this fight with dignity and hopefully alleviate some of the financial burden of having to try and fund the full cost of treatment themselves.

Thank you for all your help