In January 2023, I was diagnosed with invasive lobular breast cancer, a disease I’d never heard of let alone had any knowledge of. Despite being recognised as a distinct subtype of breast cancer in the 1970s, the research to understand the basic biology of the disease has never been carried out. This means there is no specific treatment for the 1000 women who are diagnosed globally every day.

Desperate to learn more about this type of breast cancer, whilst going through active treatment, I stumbled upon the Lobular Moon Shot Project campaign. Launched just a few weeks earlier in May 2023, by the late Dr Susan Michaelis, the campaign’s purpose is to lobby the UK Government for £20m funding for a five-year lobular breast cancer research project, which will be led by the campaign’s scientific partner, the Manchester Breast Centre.

Crossing the political divide
From the beginning of the campaign we garnered strong political cross-party support, which began with the help of two Lobular Moon Shot Project principal MPs, Dehenna Davison and Jeremy Quin (Susan’s MP at the time). In December 2023, Susan and my fellow campaigner Katie Swinburne met with the then Secretary of State for Health and Social Care Victoria Atkins who publicly pledged that the government would fund the Lobular Moon Shot Project and would include lobular breast cancer in England’s 2024 Women’s Health Strategy.

In May 2024, the general election was called, at this point the campaign had 247 bipartisan MP supporters, but disappointingly we knew once the new government was formed, we would have to start this process again. And start again we did.

Throughout the autumn and winter of 2024, campaigners including the incredible Sharon Prince rebuilt and surpassed the MP supporter numbers that we’d had prior to the election. We had multiple MPs speak up for the campaign in parliament and in December 2024, we were part of a Lobular Breast Cancer Westminster Hall Debate.

The beginning of 2025 continued at the same pace but devastatingly Susan, who had stage-4 lobular breast cancer, was getting sicker. On 6^th May we hosted the second Lobular Moon Shot Project MP drop-in day in Westminster. And two weeks later, Fact Not Fiction Films, a production company owned by Susan’s husband Tristan Loraine, released the trailer for a film about our two-year campaign called ‘Our Journey with Lobular Breast Cancer’, which includes my own lobular story. The film premiered at the Raindance Film Festival in London on 24^th June and on the same day we held a 22-minute Silent Vigil opposite Downing Street where Susan, who by this time was on 24/7 oxygen, along with myself and 20 of our fellow campaigners represented the 22 women who are diagnosed with the disease in the UK every day.

Susan’s legacy
In July 2025, after two campaign heavy years, where we consistently lobbied the Conservative, and then Labour Governments, we finally received an invitation to meet with Secretary of State for Health and Social Care Wes Streeting, Health Minister Karin Smyth, Chief Scientific Adviser Professor Lucy Chappell and advisers from the Department of Health. At the time, the Lobular Moon Shot Project had unprecedented cross-party support from more than 410 MPs, and five cross-party principal MPs including Helen Hayes (Labour), Sam Rushworth (Labour), John Milne (Lib Dem and Susan’s MP), Helen Grant (Conservative – and a lobular breast cancer survivor) and Victoria Atkins (Conservative).

Devastatingly on 9^th July 2025, Susan passed away from the disease, five days before the meeting took place and just three weeks after the Silent Protest and film premiere. She died wearing her Lobular Moon Shot Project t-shirt.

On Monday 14^th July, in the midst of grief Susan’s husband Tristan, her brother John Michaelis, myself, and co-campaigners Katie Swinburne, Kirstin Spencer, Alison Livingstone and Sarah Ramsay Smith attended the meeting with Wes Streeting and read prepared speeches to firmly outline the difficulties lobular breast cancer patients face and why this essential research funding is needed immediately. In my speech I highlighted the Labour party’s 2024 manifesto promise: “Never again will women’s health be neglected.” And their recent campaign slogan focussed on building an ‘NHS that’s fit for the future’.

The following day Wes Streeting issued a statement saying:
“…Everyone is determined to honour Susan’s legacy. I’ve asked our Chief Scientific Adviser Professor Lucy Chappell to bring campaigners and researchers together to plot a path forward to understand the biology behind this cancer, so that we can make a difference to the women affected.”

Over the summer we had two online meetings with the Department of Health but since then, radio silence.

The fight continues
Thursday marked exactly three months since our beautiful friend and legendary activist Susan died. Today, Saturday 11^th October, marks 49 days since we last heard from the Department of Health. During this time, more than 1,000 women have been diagnosed with lobular breast cancer in the UK – 49,000 globally.

Frustrated by the government’s silence, tomorrow – Sunday 12^th October – we take the campaign back to London. From 10am, we will be at Speakers’ Corner in Hyde Park standing on the historic ground where the suffragettes fought for their voices to be heard and where ordinary citizens have demanded accountability from those in power for over 150 years. We will again call on the government to deliver on its commitment to fund vital research into this neglected disease.

We will be filming this action and footage will be released next Wednesday 15th October to coincide with Global Lobular Breast Cancer Awareness Day.

Today the Lobular Moon Shot Project has the support of 428 MPs; it is the most politically supported campaign in the nation ever. The documentary film ‘Our Journey with Lobular Breast Cancer’ is screening at the Birmingham Film Festival on 16^th November and is nominated for three awards including ‘Best Documentary’, ‘Audience Award’ and ‘Bull Award’.

We will not give up; we will continue the campaign until the government keeps its promise to the women diagnosed with this disease, who are being failed every single day.

 

Reference Links:
Lobular Moon Shot Project MP Supporters
Lobular Moon Shot Project Media Page
Topical Questions Debate – 23^rd January 2024
Lobular Breast Cancer Debate – 10^th December 2024
Watch the Debate here
Rare Cancers Bill – 14^th March 2025