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Introducing ALK Positive Denmark An interview with President, Irfan Gilani
Can you share with our readers the founding story of ALK Positive Denmark? What inspired the establishment of the organization? ALK Positive Denmark, founded on October 6, 2022, stands as a dedicated advocacy group for ALK-positive lung cancer patients and their families. The genesis of this initiative can be traced back to Heidi Vaarbjerg, who…
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First two weeks on NVL-655 clinical trial: Field Research for the Clinical Trials Committee
I started on the Phase II NVL-655 trial on March 1st, 2024, at UC Davis’s Sacramento campus, a seventy-five-mile ride from my house. I had pre-registered with Dr. Jonathan Riess’s trial coordinator in December, sending records from my oncologist electronically, and answering a lot of questions. They wanted a record of my initial cancer, and…
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Cozy Slow Cooker Beef Stew By Chef and fellow ALKie, Juli Posner
Cozy Slow Cooker Beef Stew By Chef and fellow ALKie, Juli Posner I think once you try this virtually fuss-free, oven-baked method, you will be sold by how delicious it is. Don’t be afraid of the wacky combination of ingredients. I promise it works. It can be made two days ahead for best results!!
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Unlocking Hope: Navigating your Path to ALK-Positive Lung Cancer Clinical Trials
Participating in a clinical trial can provide hope for those with ALK-positive lung cancer, offering a glimpse into the realm of cutting-edge treatments. Understanding eligibility criteria can be paramount for those seeking to participate in a clinical trial. Here we will highlight some of the opportunities and challenges of clinical trial eligibility
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University of Michigan Biopsy and Organoid Drug Screening Experience
I’m writing this on the return flight from the University of Michigan, where I underwent a thoracic biopsy for three lymph nodes that have been lighting up in my recent PET scans. As I am the ALK Positive patient advocate on the Judith Tam ALK NSCLC Research Initiative Scientific Advisory Board, l thought I’d do…
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Dr. Sydney Barned
We interviewed Dr. Sydney Barned – a medical doctor, ALK patient, and very active lung cancer advocate. We learned about her personal journey with ALK+ lung cancer, how lung cancer has also affected other members of her family, and, more importantly, her tireless involvement in lung cancer advocacy, some of which has already resulted in…
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ALINA Trial Unveils a Paradigm Shift in the Battle Against Early Stage, Resectable ALK-Positive Lung Cancer
One of the challenges in our community has been the treatment of earlier stages of ALK-positive lung cancer, including stages IA through 3A. Historically, we’ve faced a lack of definitive guidelines for addressing the illness that represents 30-40% of the total ALK lung cancer population. Patients in these stages are traditionally treated with surgical tumor…
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Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania
When we decided to interview Summer Hall Farmen about her personal journey– we didn’t know we were in for a treat. When we decided to interview Summer Hall Farmen about […]
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ALK Positive Europe – Strengthening the voice of ALK-positive cancer patients in Europe
ALK Positive Europe (APEU) was founded in 2022 and has its origin in a Facebook group of European patient advocates who were supported in the beginnings by Gina Hollenbeck. In […]
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Unlocking Hope: Breakthroughs in ALK-Positive Cancer Research for All Ages
The spectrum of ALK-positive cancer knows no age limits. Meet the faces of courage: the ordinary individuals with the ALK-positive mutation. This mutation, notorious for lung cancer in adults, defies […]
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Pediatric ALK Spotlight Interview with mother and caregiver Ashley Sitorius, Hampstead, North Carolina
We interviewed , mother and caregiver of 11-year-old Deliah, who was diagnosed with ALK-positive brain cancer when she was just 7. ALK can actually appear in many pediatric cancers as […]
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“My Favorite (Turkey) Bolognese:” Healthy Recipe by ALKie & Chef Juli Posner
This comforting soup makes a delicious and savory soup that’s perfect for those cold busy nights in the Fall and Winter when butternut squash is also in season. *feel free to substitute sweet pork sausage in this recipe if spicy isn’t your thing! One pot – 30 minutes start to finish!