ALK Positive

09/04/2026

This is what we want research to make possible.

More time. More ordinary days. More appointments where someone living with stage 4 lung cancer gets to hear the words:

Chest clear. Brain clear.

We know that isn’t everyone’s reality. This week especially, our community is holding good news alongside immense sadness — mourning someone much loved, while others we care about are facing progression.

That’s why we keep pushing for research. For more effective treatments. More options when treatments stop working. And more people living longer and living well with lung cancer.

Yesterday, those precious words — chest clear, brain clear — were heard by our co-founder Yvonne, five years after her stage 4 ALK-positive lung cancer diagnosis and still on her first targeted therapy.

We’re incredibly grateful to Professor Sanjay Popat and to every researcher, clinician, patient and family helping move lung cancer research forward.

Here’s to more good news. For all of us. 🩵

09/03/2026

Great discoveries begin with great ideas! Let's encourage more of them.

Great discoveries start with great ideas.

TOGA's Inspirational Research Grant supports research that addresses important questions in thoracic oncology, with the potential to influence future clinical practice and improve outcomes for patients.

Grant details:
💰 Amount: $50,000
📆 Duration: Two years
🤝 Eligibility: Projects must involve consumer representatives

Could your research be the next step forward?

Applications close 20 September 2026.

Find out more and apply > https://thoraciconcology.org.au/inspirational-research-grant/

08/23/2026

Europe: has been absolutely baking. 🔥☀️

Everyone else: shorts, vests and sandals.

Some of us on lung cancer targeted therapies: jeans, long sleeves, gloves, giant hat, sunglasses and a mask. 😂

Sometimes casually cycling through a European heatwave looks less like summer and more like witness protection. 😎🚲

08/22/2026

08/18/2026

Join us for Clinical Trials Connect this Thursday, August 20, at 7:00 PM ET!

Dr. Ken Culver, ALK Positive’s Executive and Medical Director, will review a year of progress in ALK research and treatment, highlighting new clinical trials, publications, and important data updates from our medical committees and collaborators.

We will then open the floor to connect with community members about their clinical trial experiences, including what motivated them to participate, what the experience was like, and what they learned. Participants in TRI-611, gilteritinib, BNT-116, ivonescimab, neladalkib, and other trials are invited to share their perspectives.

📅 Thursday, August 20
⏰ 7:00 PM ET
🔗 Join us: https://alkpositive.org/event/clinical-trial-connect-2/2026-08-20/

08/18/2026

Cancerversaries are more than a date.

Our old lives irrevocably changed. Yet somehow, a new life emerges.

Every day we step forward into an uncertain future, grateful for the wonderful people who walk alongside us. Thankful for the researchers who dedicate themselves to progress. For the people we see, and those we never will, who make a difference along the way.

Today, our co-founder and Chair, Yvonne, marks five years since her stage 4 ALK+ lung cancer diagnosis. We’re celebrating everyone marking an anniversary of their own and those hoping to reach the next one.

Here’s to more birthdays, more ordinary days, and more time together.

08/17/2026

At diagnosis many of us hear or fear:
“You have months, maybe a year.”

That’s what a stage 4 lung cancer diagnosis used to mean.

Diane is 12 years in. Marc is nearly 13. Frank is 10.

Not everyone gets this kind of time yet. But this is what research has made possible for some, and it’s what we’re working to make possible for everyone.

Diane — 12 years w EGFR & MET amplification
Marc— ~13 years w ALK+
Brittany— 5 years w RET+
Teri — 4.5 years w EGFR exon 19
Frank— 10 years w EGFR T790M
Amy — 6 years w RET+
Jim— ~5 years w extensive-stage small cell lung cancer

Seven people. Seven different stories. Seven reminders of how far lung cancer research has come, and how much further it still needs to go.

More time can mean more birthdays. More milestones. More memories. More chances to benefit from the next treatment, the next clinical trial, the next breakthrough.

This is our August dose of hope. 💚

📍 Tag someone who needs this today.

08/02/2026

Our Vice President, ALKtALK co-host and friend to all Summer Farmen says it all here. Anyone can get lung cancer. Biomarker testing is fundamental to improving outcomes in people like Summer.

World Lung Cancer Day reminds us of the importance of raising awareness, advancing research and supporting everyone impacted by lung cancer 🤍. We’re proud to share the stories of patients, like Summer, to help spread further information and education around .

Hear more from Summer and her story at the link here: https://spkl.io/61867z8YI

08/02/2026

Today is World ALK Lung Cancer Day 🧬🫁

19 years ago on August 2, 2007, Dr. Hiroyuki Mano and team’s discovery of the ALK gene rearrangement changed everything for people with a very specific form of lung cancer, known as ALK-positive. Since then, the science has advanced, treatments have evolved, and a powerful community has formed, giving hope to hundreds of thousands worldwide.

Swipe through to meet seven people living that discovery firsthand: Clara, Colin, Amanda, Marc, Kirk, Summer and Duncan. Each photo pairs the year they were diagnosed with today, and their lowest moment with where they stand now.

Today’s survival hasn’t happened by chance. Back in a lab in Japan in 2007, a scientist asked the right question, and researchers, advocates, and funders have kept building on his answer ever since.

Today, we honor Dr. Mano and every researcher, advocate, patient, and caregiver who has pushed this field forward. We fund research because the next breakthrough is out there, and every step brings us closer to better treatments, longer lives, and a future where no one faces this alone.

Clara. Colin. Amanda. Marc. Kirk. Summer. Duncan. Seven reasons the science matters. Let’s celebrate Dr. Mano’s achievement today, and keep pushing for everything still ahead.

A special thank you to Clara Clara Mae Cirks 🦋 whose beautiful photo here inspired this post. 🩷

07/26/2026

More than medicine. 💙

Another great start to our 2026 ALK Positive Summit on Sunday and we are reminded that living well with ALK+ lung cancer is about so much more than treatment.

From last night’s unforgettable American Road Trip celebration to this morning’s walk through Washington, DC, we’ve celebrated friendship, resilience and the moments that make life meaningful.

Today, we explored what it means to truly live well—from expert discussions on the future of ALK care, to conversations about palliative care, advocacy, care partners, and choosing your own path.

Every session carried so many messages of hope and resilience.

Thank you to every patient, care partner, clinician, researcher, volunteer and supporter who made this Summit so special.

Here’s to continuing the conversations, the collaboration and the progress. We truly are 💙