News and Views
A round up of news and views impacting the lives of people affected by ALK-positive lung cancer
Pregnancy and Targeted Therapies
Targeted therapies (Tyrosine Kinase Inhibitors – TKIs) may significantly extend lives and It can be expected that more women of childbearing age may contemplate pregnancy. Unplanned pregnancies may occur and women who are already pregnant might be diagnosed with ALK-positive LC.
TKIs might affect the fetus and we are preapring advice about this. Meanwhile, please contact us if you would like to discuss this.
Christmas Appeal
For 1 week only - Double Your Money
We have match funding for all donations made
2nd - 9th December
More details soon
Regional Lunches
Lunches are now being arranged by our Regional Ambassadors throughout the UK to coincide with November's Lung Cancer Awareness Month.
The lunches are subsidised for patients plus companions.
"I just wanted to say thank you and that we really enjoyed meeting the group at the lunch on Saturday. It was refreshing to see people enjoying life and living with cancer and hope for the future".
Social Media Award Finalist
National recoginition for the ALL YOU NEED IS LUNGS campaign produced jointly by ALK Positive UK, EGFR Positive UK and Ruth Straus Foundation.
The campaign, which featured ALK-positive and EGFR-positive patients telling their own stories openly and honestly, was a finalist in the best charity campaign category.
Lorlatinib Approved
Lorlatinib is a 3rd generation Tyrosine Kinase Inhibitor (TKI) used for the treatment of advanced ALK-positive lung cancer.
On 7 October 2025, it was approved by the National Institute for Health and Care Excellence (NICE) for 1st line use for newly diagnosed people in England and Wales. It had previously been approved in Scotland.
Patient Conference
Our 4th Patient Conference, attended by 190 people affected by ALK-positive lung cancer, both patients and carers, was held in September and we have received very positive feedback, including
"Thank you for a wonderful conference and a wonderful opportunity to meet other people in the same boat. This was very professionally organised and run and I was very impressed. This was my first attendance".
Videos of all sessions and a report of the conference are on the website.
Chief Executive Officer Appointed
The charity is delighted to announce the appointment of Lynsey Conway as its Chief Executor Officer. Lynsey brings 20 years experience in the lung cancer arena and her appointment is an important step in the development of the charity.
Lynsey said, " I am delighted to have joined this vibrant charity and hope that my experience and knowledge will contribute to its development".
Hardship Fund
1 in 4 of our members living with ALK-positive lung cancer report that they are experiencing significant financial hardship as a result of their diagnosis.
The charity is pleased to announce the launch of the Brenda Cobb Hardship Fund which is financed by Brenda's son, Callum. In fact, within 2 days, we made the first grant. Contact us, if you feel that you could do with some help.
Frequency of Head MRIs
3 in 5 ALK-positive patients are likely to develop brain metastases (tumours) within 3 years. The charity considers that 6-monthly MRI scans should be carried out before symptoms occur, so that metastases can be treated when they are small and few in number.
Our Abstract calling for a national protocol has been selected for display at the United Kingdom Lung Cancer Coalition annual conference.
Good News for those diagnosed early
Patients diagnosed at Stages 1-3 would usually have received surgery, if possible, followed by chemotherapy. Trials have shown that a targeted therapy, Alectinib, a tablet taken as an alternative to chemotherapy, produces better outcomes.
This should now be the standard of care.