Leiomyosarcoma - LMS Research UK

01/02/2026

This is unbelievable - the UK Government has confirmed that my Rare Cancers Bill will be at the heart of the National Cancer Plan:

"Taken together the Rare Cancers Bill, Cancer Clinical Trials Accelerator, strengthened partnerships with Cancer Research UK, record funding and the forthcoming National Cancer Plan represent a step‑change for brain cancer patients — replacing delay and fragmentation with access, co-ordination and hope."

There is support in the statement from:
➡️Secretary of State for Health and Social Care, Wes Streeting
➡️Science Minister, Lord Vallance
➡️Professor Peter Johnson, National Clinical Director for Cancer at NHS England
➡️Prof Lucy Chappell, DHSC Chief Scientific Advisor and Chief Executive of the NIHR
➡️Professor Richard Gilbertson, Chair, Tessa Jowell Brain Cancer Mission
➡️Head of Clinical Research at Cancer Research UK
➡️Dan Knowles, CEO at Brain Tumour Research, Dr Graham Cadwallader

Now all we have to do is get the bill passed!! I am so thankful to everyone in my office for getting us this far! Big thanks also to Baroness Elliot, H/Advisors & the 40+ charities that support us.

See: https://www.gov.uk/government/news/greater-access-to-breakthrough-trials-for-rare-cancer-patients

23/01/2026

The link below takes you to a story about the inspirational Karen Delin a 20+ year LMS survivor who has done amazing work for Sarcoma UK:

https://www.romfordrecorder.co.uk/news/25637881.buckhurst-hill-hospice-nurse-wins-sarcoma-uk-award/

Amongst other things she has setup a support group who meet on the first Monday of each month. The meetings are either on zoom or hybrid. When it is hybrid, the meeting location alternates between The Royal Marsden and UCLH. Attendance is usually anywhere between 2-12 people and there is always a few with LMS.

If you or anyone you know would like to be included in the email reminders, please see the link below:

https://www.londonsarcomasupport.net/events

Karen also helps run the gynae sarcoma email support group, which covers both ULMS and ESS. The link to this group registration is below

https://groups.io/g/GynaeSarcoma

A remarkable lady.

The Gynae Sarcoma e.mail forum set up on groups.io is open to anyone affected by gynaecological sarcomas, sometimes shortened to gynae sarcomas. You will be able to use the group to discuss things like diagnosis and treatment, as well as finding emotional support from other members. Our group is not...

23/01/2026

CHARITY COMMUNICATIONS/ SOCIAL MEDIA VOLUNTEER

Can you ( or someone you know ) help us?
We are looking for a volunteer to help with our social media and communications.

LMS Research UK is a young volunteer led charity. We support research and education to enable better treatment and outcomes for Leiomyosarcoma patients. We are the only charity in the UK focussed on LMS and the funds we raise go to LMS specific projects.

We estimate a time commitment of 1-2 hours a week, and we are looking for someone with relevant experience who can help us with social media posting, engagement and monitoring.

This might suit someone with marketing/social media experience who is looking for charity experience to enhance their CV while contributing to a worthwhile cause. We promise that you will also be making a positive difference to people affected by this rare cancer.

If you, or someone you know might fit the bill please let us know below or email us on admin@lmsruk.org

Please feel free to share this post!

Maisie, Colin, Leo and Julia

19/01/2026

Gail Redpath, 53, from Edinburgh is living with Stage 4 terminal cancer after being diagnosed in 2024.

“My first thought is how my daughters are going to survive.
I'm the matriarch of the family. I can't bear the thought of not seeing my daughters marry or have children.
When I got diagnosed, I cleared my wardrobe out so they didn't have to. It was like I was already dead.
I've shut the door on those thoughts or else I'll be pulled down to the depths of depression.”

A massive thank you to Gail for sharing her deeply personal story to raise awareness of Leiomyosarcoma.
Please help Gail with her ambition to raise funds for LMS Research UK by clicking through the link in the article/below. Thank you.

Gail Redpath, 53, from Edinburgh is living with Stage 4 terminal cancer after being diagnosed in 2024.

17/01/2026

Big thank you to Dr Scott Arthur MP and all his supporters towards the Rare Cancers Bill…. We are really hoping there will be change.

16/01/2026

16/01/2026

https://www.facebook.com/share/p/1Aw5J45wBA/?mibextid=wwXIfr

The Rare Cancers Bill has passed its Second Reading in the House of Lords.

This is another important step towards fairer treatment, better data, and stronger services for people with rare and less common cancers like sarcoma.

The Bill now moves to the next stage in the Lords, where it will be looked at in more detail by a committee and debated further before returning to the Commons if any changes are made.

Once both Houses agree on the final version, the Bill can be signed into law.

We’re proud to be part of the effort pushing this forward, and grateful to everyone who’s contacted their MP or shared their story. You are helping to keep rare cancers on the political agenda.

16/01/2026

https://www.mirror.co.uk/news/health/i-thought-just-menopause-doctors-36561362.amp

Brave mum Gail Redpath is undergoing palliative chemotherapy after doctors found a golf ball-sized growth in her womb - which was a very rare form of cancer

15/01/2026

The Rare Cancers Bill is intended to incentivise research and investment into rare cancers, which tend to be more difficult to diagnose and treat than common cancers. The bill would require the secretary of state to promote research into rare cancers and to review licencing for medicines which treat...

14/01/2026

I'm happy to confirm that Delyth Morgan, Baroness Morgan of Drefelin, has registered an interest in speaking in the House of Lords on Friday as part of the debate for the 2nd Reading of my Rare Cancers Bill.

She has been instrumental in raising breast cancer to be a high-profile issue in the UK, not least in her time as the Cheif Executive of Breast Cancer Now.

Many thanks to Baroness Elliott for all the work she is doing to ensure my Bill passes.