LAM Action

Good luck to Pippa Byrne from Ramsay who is taking on the Isle of Man 'Parish Walk' with the aim of completing the 85 mile route around the island in 23 hours. She is raising money for LAM Action because her friend, Anna Kerruish - a local farmer - has LAM. Pippa has taken on the challenge before, but last time she ended up in hospital. She hopes she has trained enough to avoid that this year.
As well as meeting up with Anna en route, Pippa will be supported by her partner, Simon and sister, Emma and her two sons, Daniel and Dylan.
Spare a thought for them all in the early hours of Sunday morning and if you would like to add to Pippa's fundraising total go to: https://www.justgiving.com/page/pippa-clare-1

Congratulations and thank you to all 5 LAM Action runners who took part in today's London Marathon. Their fundraising total so far is over £20,000!

London Marathon 2026 First LAM Action runner to finish - well done Marcus West

Good luck to our amazing runners on Sunday! They all have a personal connection to a LAM patient so anything you can give in sponsorship will make a big difference - thank you!

Eleanor Fairbrother:
https://2026tcslondonmarathon.enthuse.com/pf/eleanor-fairbrother

Jonathan Smith:
https://2026tcslondonmarathon.enthuse.com/pf/jonathan-smith

Rachel Stinton:
https://2026tcslondonmarathon.enthuse.com/pf/rachel-stinton

Marcus West:
https://2026tcslondonmarathon.enthuse.com/pf/marcus-west

Leagh Callow:
https://www.justgiving.com/page/leagh-callow-4

Hotter than a leftover hot cross bun, the spring edition of LAMPost is now hot off the press! Big thanks to everyone who contributed!

To download the version for mobile devices: https://lamaction.org/wp-content/uploads/2026/04/LAMPost-Spring-2026-Mobile-Device-Friendly.pdf

To download the version for printing:https://lamaction.org/wp-content/uploads/2026/04/LAMPost-Spring-2026-Print-Version.pdf

Happy reading and very best wishes from all of us at LAM Action.

“Experiences of employment while living with rare diseases in the UK” (Another survey for LAM patients please, this time from the University of Nottingham)

The agenda for the LAM Action 2026 Annual Meeting in York has now been finalised! We are confident that the programme for the day has something for everyone, and we have taken account of feedback and built in more time for socialising.

Please visit the following link to download the information pack which also includes the booking form. We look forward to seeing you in York on Saturday June 6th!
https://lamaction.org/wp-content/uploads/2026/03/LAM-Action-Annual-Meeting-2026-Registration-Form.pdf

This opportunity is open to LAM patients around the world, including the UK!

Grant Study Section Patient Voice Committee

Applications are now open to join the Patient Voice Committee (PVC). PVC members will review grant proposals alongside scientific reviewers, provide feedback from a patient perspective, and vote on which studies to fund. The PVC ensures the patient voice is heard and that research remains focused on studies that will most impact those living with LAM.

Details:

Who: 3 patients will be selected (US and International)

Commitment: 25-30 hours per year

Term: 3 years

Interested? If you are active in the LAM Community and want to shape the future of LAM research, we want to hear from you!

Learn more and apply: https://www.thelamfoundation.org/take-action/gss-patient-voice-committee/

They made it! Huge congratulations to Harriet Davidson, her husband Adam and best friend Lauren Weetch for battling through the pain barrier and completing 4 marathons in the space of 4 days to raise funds and awareness for LAM Action.

“We climbed over 2500m of altitude over the course of the four days, despite all of our aches and pains and blisters, had long and isolating moments on the Imber range and Salisbury plain, but the true determination and support from donations, positive messages and kind strangers truly got us through.”

An awesome achievement – well done to you all!

And they’re not stopping there – a charity quiz on Friday night will keep the fundraising going, with an incredible amount of approximately £8,000 raised so far! Big thanks to everybody who has supported their fundraising, if you would like to help, please visit the link below:

https://www.justgiving.com/page/harriet-saunders-3?utm_medium=FR&utm_source=CL&utm_campaign=021&fbclid=IwY2xjawQSVFRleHRuA2FlbQIxMABicmlkETBNY2doakhUbVRtejRxcDNOc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHtrZWnDCBbzcLUqI4F_P41F1kA-Onc4Z_wxhJB-NHctGbci9b-wzZIxxDRrA_aem_nJZAPl01PLGyAXOQFhQfnw

Well done again and thank you from all of us at LAM Action.