ALK Positive Lung Cancer - UK

ALK Positive Lung Cancer - UK Support Empower Advocate

3.5 million people in the UK are living with a rare disease.ALK+ lung cancer is one of them.It may sit under the lung ca...
01/03/2026

3.5 million people in the UK are living with a rare disease.
ALK+ lung cancer is one of them.

It may sit under the lung cancer umbrella, but it is biologically distinct. It affects many people who have never smoked. It relies on precise biomarker testing to guide treatment. And it requires specialist knowledge to manage well.

Being rare can mean fewer clinicians see it regularly. It can mean delays in getting the right tests. It can mean having to explain your diagnosis again and again.

On Rare Disease Day, we stand with everyone living with ALK+ lung cancer and with the wider rare disease community calling for earlier diagnosis, equitable access to testing and treatment, and consistent specialist care.

This is a post from the Less Survivable Cancers Taskforce which I have just actioned.  This week as part of Less Surviva...
15/01/2026

This is a post from the Less Survivable Cancers Taskforce which I have just actioned.

This week as part of Less Survivable Cancers Awareness Week we’ve:

📊 Shared the shocking figures showing the huge disparities in research funding
🔬 Heard directly from the researchers on the frontline of tackling these cancers
🗣️ Highlighted why change can’t wait

Now we need your support to urge the government to rethink their funding structure.

Email your MP today.

1 email can be ignored, but thousands can't, visit the Less Survivable Cancers Website to find out more.

https://lnkd.in/eS3dh5-q

09/12/2025

Our week-long match-funded Christmas Appeal has ended and I a delighted to announce that we reach our target of £10,000.

I want to thank all those members who donated so generously.

I want to thank the private person, who wishes to remain anonymous, who provided half the match-funding.

I want to thank the Hospital Charity Fund for providing the other half of the match-funding.

I want to thank the Big Give Charity for enabling all this to happen.

I want to thank our Manager, Rebecca Welsh, for doing a great job pulling all this together.

Well done everyone.

I was listed on LinkedIn by Mike Kinnaird so I hope he won’t mind me sharing as it’s so timely and I know many people do...
02/12/2025

I was listed on LinkedIn by Mike Kinnaird so I hope he won’t mind me sharing as it’s so timely and I know many people don’t use LinkedIn.
To follow Mike is reason enough to join LinkedIn as he has many a wise word to share.
Your sister has cancer. Your partner. Your parent. And Christmas is coming at you like a speedy train of expectation and you have absolutely no idea what to do with the thing.

Do you go big - decorate everything, cook the full spread, make it special because...well...you know...

Except that thought makes you feel sick and also you're exhausted and they're exhausted and "making memories" might just make everyone cry.

Or do you scale right back - minimal fuss, low expectations, just get through it? But then does that signal you've given up?

Does it make their cancer the thing that killed Christmas? Are you robbing them of normal when normal might be exactly what they really, really need right now?

Or maybe, do you just... ask them?

Except they probably don't know either. They're as confused as you are. And putting the decision on them feels like one more thing they have to manage when they're already managing everything. My fault again, they mutter.

Here's a very possible truth: there's no right answer.

Whatever you choose will feel partly wrong because the situation itself is wrong.

Cancer at Christmas isn't a puzzle you can solve by picking the correct approach.

But maybe there's a conversation somewhere in the mess.

Not "what do you want to do for Christmas?" - too big, too loaded. But smaller: "I genuinely don't know whether to make a fuss or not make a fuss, and I'll get it wrong either way, so can we just figure this out together as we go?"

Maybe that's it. Maybe it's a copout. Maybe Christmas this year isn't a plan, it's a negotiation. You check in. They check in. You try something and if it's too much you stop.

If they want turkey even though they can't taste it, in fact everything has a metallic taste, you make turkey. If they want beans on toast in front of the TV, that's Christmas dinner.

If they want people around, you rally people. If they want nobody, you get the battered Monopoly out of the cupboard upstairs and argue about who's going to be the banker.

Maybe the perfect gift isn't getting it right - it's being willing to get it wrong and adjust. To say "I thought this would help but it's not helping, what do we need instead?"

To let Christmas be imperfect and incomplete and whatever it needs to be this year.

Is there - could there be - a right answer? You've been there? How do you make this fit?

.

The idea that you can “starve cancer” by cutting out sugar is a myth, but it’s a myth people still hear all the time.A n...
25/11/2025

The idea that you can “starve cancer” by cutting out sugar is a myth, but it’s a myth people still hear all the time.

A new study in Cell helps explain why this advice can be unsafe. When glucose is heavily restricted, tumours can release signals that weaken the immune cells that normally protect the lungs, making it easier for cancer cells to settle there.

This is preclinical research, and it isn’t specific to lung cancer, but it does look at what happens inside the lungs which is why it matters for our community.

Extreme dietary restriction is not a safe or proven approach for lung cancer, and it isn’t recommended.

We’re only in week three of Lung Cancer Awareness Month and we’ve already hit one million views.Thank you so much to eve...
22/11/2025

We’re only in week three of Lung Cancer Awareness Month and we’ve already hit one million views.

Thank you so much to everyone who signed up to be part of this year’s campaign. Whether you shared your story, helped spread the word, or supported quietly in the background, you’ve helped us get this message out there.

A special thank-you to our 30 voices for All You Need Is Lungs 2025. Your stories show just how varied and complex the lung cancer experience is. Reaching more than a million impressions is a huge moment for us and it wouldn’t have happened without you.

If you haven’t seen the stories yet, we’d love you to take a look.

www.allyouneedislungs.org.uk

Every day, 130 people in the UK are diagnosed with lung cancer. That’s one person about every 11 minutes.Lung cancer can...
17/11/2025

Every day, 130 people in the UK are diagnosed with lung cancer. That’s one person about every 11 minutes.

Lung cancer can affect anyone and spotting it early can make a real difference.

Be alert to symptoms that don’t go away, like:
• a cough that lingers
• breathlessness
• fatigue
• pain in the chest, shoulder or back
• hoarse or croaky voice
• unexplained weight loss
• chest infections that keep coming back
• coughing up blood
• swollen lymph nodes around the collarbone

💟 All You Need Is Lungs is a joint awareness campaign by ALK Positive Lung Cancer UK, EGFR Positive Lung Cancer UK, and Ruth Strauss Foundation, raising awareness so more people get diagnosed earlier.

📎 Source: Cancer Research UK

13/11/2025

⚠️ Urgent recall: Cashew nuts sold at Lidl and Poundland
These products may contain glass, posing a serious risk of harm

Lidl – Simply Roasted & Salted Cashews 125g
Return to store for a full refund.

Poundland – Tasty Snack co. Roasted & Salted Cashew Nuts 100g
Return to store for a full refund. No proof of purchase needed.

I just thought I would pop on here with some good news for Friday regarding our All You Need Is Lungs campaign….We have ...
07/11/2025

I just thought I would pop on here with some good news for Friday regarding our
All You Need Is Lungs campaign….

We have had a good start with over 50K impressions on TikTok and on Instagram. 3K on LinkedIn and over 4k on X 5k on Bluesky so over 100k in total.
This wouldn’t have been possible without our amazing volunteers - thank you!

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Caldicot
NP26

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