Introducing ALK Positive Australia Inc. An interview with Deputy Chairperson, Graham Hall
Introducing ALK Positive Australia Inc. An interview with Deputy Chairperson, Graham Hall

Can you share with our readers the founding story of the ALK Positive Australia? What inspired the establishment of the organisation.

I, like many others, including the other founders, felt at initial diagnosis that it was difficult to find local, relevant information about ALK+ Lung Cancer and I was dubious of heading to Facebook for answers. Australia unfortunately does not have a dedicated Lung Cancer body despite Lung Cancer remaining the cancer with the highest mortality rate of all cancers in the country. Instead, we have Cancer Australia, Lung Foundation Australia, Cancer Council Australia and Rare Cancers Australia.

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ALK InternationalKirk SmithPatient Spotlight, Graham Hall, ALK Positive Australia
Gilteritinib for the Treatment of ALK positive non-small cell lung cancer (NSCLC
Gilteritinib for the Treatment of ALK positive non-small cell lung cancer (NSCLC

This trial is for patients with Stage 4 ALK positive NSCLC that have progressed on an earlier generation ALK TKI AND lorlatinib, and on any number of other standard-of-care or trial treatments. The trial drug is gilteritinib (aka Xospata), which was approved by the FDA in 2018 for a type of leukemia, but has been shown to have activity against ALK NSCLC in patient-derived models (mice with transplanted human cancer).

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Clinical TrialsKirk SmithGilteritinib, Research
Vegan Tuscan Chickpeas A recipe by chef and fellow ALKie, Juli Posner
Vegan Tuscan Chickpeas A recipe by chef and fellow ALKie, Juli Posner

When we think of Superfoods, chickpeas are not necessarily what comes to mind, but chickpeas have many surprising health benefits. They contain important vitamins and minerals (B, B6, folate and vitamin E), they have protein, lots of fiber, and all that fiber may actually keep you feel fuller longer, keeping your weight in check.They are also gut healthy and heart healthy. You can roast them, puree them, and add them to soups and stews.

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Nutrition, RecipesKirk SmithRecipes, Nutrition
Nuvalent Receives U.S. FDA Breakthrough Therapy Designation for NVL-655
Nuvalent Receives U.S. FDA Breakthrough Therapy Designation for NVL-655

CAMBRIDGE, Mass., May 16, 2024 /PRNewswire/ -- Nuvalent, Inc. (Nasdaq: NUVL), a clinical-stage biopharmaceutical company focused on creating precisely targeted therapies for clinically proven kinase targets in cancer, today announced that the U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation (BTD) to NVL-655 for the treatment of patients with locally advanced or metastatic ALK-positive non-small cell lung cancer (NSCLC) who have been previously treated with two or more ALK tyrosine kinase inhibitors (TKIs).

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Clinical TrialsKirk SmithNuvalent, Research
Patient Spotlight Marc Muskavitch Boston area, Massachusetts, USA
Patient Spotlight Marc Muskavitch Boston area, Massachusetts, USA

Marc Muskavitch is an ALK patient, Board member for ALK Positive, Inc., and one of the leading members of the ALK Positive Medical Committee. We interviewed him on his journey with ALK+ lung cancer so far, his work with the Medical Committee, and what most excites him about the future of ALK+ cancer treatments and collaborations to improve outcomes for ALK patients.

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Patient StoriesKirk SmithResearch, Break Through Cancer, Marc Muskavitch
Break Through Cancer and ALK Positive, Inc. Team Up to Conquer ALK-Positive Lung Cancer with a $2 Million, Multi-year, Research Partnership
Break Through Cancer and ALK Positive, Inc. Team Up to Conquer ALK-Positive Lung Cancer with a $2 Million, Multi-year, Research Partnership

Break Through Cancer announces a new partnership with ALK Positive Inc. (ALK Positive), a foundation funded by patients with ALK-positive lung cancer and their families. ALK Positive and Break Through Cancer are joining forces to fund a new initiative in lung cancer research with the hope of creating durable responses and cures for patients with ALK-positive lung cancer. 

ALK Positive is the first foundation partner to commit funding to Break Through Cancer for the initiative. Jointly, they hope to inspire other foundations, individual donors, and industry partners to join them as they work to build a coalition to support this life-saving effort. 

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Research, ALK Positive NewsKirk SmithResearch, Break Through Cancer
The Global Landscape of Research: ALK-Positive Cancer Therapeutic Trials Worldwide
The Global Landscape of Research: ALK-Positive Cancer Therapeutic Trials Worldwide

In the ever-evolving arena of ALK-positive cancer therapies, clinical trials offer patients not only cutting-edge interventions but also a chance to contribute to the advancement of ALK cancer treatment. In examining international ALK cancer trials, we uncover both challenges and opportunities for those seeking innovative treatments beyond conventional options.

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Clinical TrialsKirk SmithClinical Trials
An Interview with Dr. Angel Qin:   "From Leukemia to ALK+ NSCLC: Finding a New Way to Overcome Drug Resistance"
An Interview with Dr. Angel Qin:   "From Leukemia to ALK+ NSCLC: Finding a New Way to Overcome Drug Resistance"

Editors Note: This interview is by Juhi Kunde, Director of Patient Gateways and Science Marketing at LUNGevity and was orginally posted on their web site on March 5, 2024. Dr. Angel Qin, MD, medical oncologist at the University of Michigan and one of the recipients of our ALK Positive Lung Cancer Research Awards.  ALK Positive, Inc. collaborated with LUNGevity to support this very important work with the ALK Positive, Inc / LUNGevity ALK-Positive Lung Cancer Research Awards. 

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Research, ALK ExpertsKirk SmithResearch, Dr. Angel Qin, Gilteritinib
PATIENT SPOTLIGHT: Xavier Chen, Paris, France
PATIENT SPOTLIGHT: Xavier Chen, Paris, France

1.    Tell us a little about your background - personal and professional - and your journey with ALK+ lung cancer so far.

I am a 61-year-old French citizen of Chinese origin, now living in Paris. Beforemy diagnosis, I was living in Chiangmai, a northern city of Thailand, in semi-retirement after a very fulfilling career successively in the French Foreign Service, International Energy Agency (IEA), global energy companies BP and Equinor, and Chinese energy company ENN. Before COVID, I spent 17 years in Beijing where I worked for the aforementioned companies as senior executive.

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Patient StoriesKirk SmithPatient Spotlight, Xavier Chen
Introducing ALK Positive Denmark An interview with President, Irfan Gilani
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 recognized the need for a support network for Danish patients facing ALK-positive lung cancer.

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ALK InternationalKirk Smithadvocacy, International, Patient Spotlight
First two weeks on NVL-655 clinical trial: Field Research for the Clinical Trials Committee
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 details on the mutations that came up with various progressions, along with all the dates.  The current mutational profile was most important to the doctor for qualification to participate.  My local oncologist knew Dr. Riess personally, which helped, I think, and having your oncologist touch base with a prospective trial-coordinating doctor can help open the door. 

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Clinical Trials, Patient Stories, ResearchKirk SmithNuvalent, Clinical Trials
Cozy Slow Cooker Beef Stew By Chef and fellow ALKie, Juli Posner
Cozy Slow Cooker Beef Stew By Chef and fellow ALKie, Juli Posner

You might be surprised to know that at the end of my busy personal chef workday cooking for others, I rarely spent any time or energy making a delicious meal for myself. This is why I love slow cookers!!! This stew can also be made on the stovetop if you have time to spare, but for busy people like me a slow cooker can’t be beaten!With its quick prep and easily accessible ingredients, by the end of the day (or overnight) you have a delicious, rich, cozy beef stew packed with nourishing vegetables and tender beef.

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NutritionKirk SmithRecipes
Unlocking Hope: Navigating your Path to ALK-Positive Lung Cancer Clinical Trials
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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Clinical TrialsKirk SmithClinical Trials
University of Michigan Biopsy and Organoid Drug Screening Experience
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 a trial run and see if going there for my biopsy and tissue testing would be worthwhile. 

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Clinical Trials, ResearchKirk SmithClinical Trials, Research, University of Michigan
Patient Spotlight: Dr. Sydney Barned, Maryland, USA
Patient Spotlight: Dr. Sydney Barned, Maryland, USA

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 legislation being passed to help lung cancer patients

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Patient StoriesKirk Smithadvocacy, Patient Spotlight, Dr. Sydney Barned
Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania
Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania

When we decided to interview Summer Hall Farmen about her personal journey (that includes being a mom to an adult son with severe cerebral palsy), her journey with ALK-Positive lung cancer, as well as her active involvement in our organization (Board member, ALKtALK Healing Arts program, fundraising, and Summit Committees, to name a few), we didn’t realize we were in for another treat. Summer’s interview didn’t just give us a good glimpse of her own life. It also helped us get to know another prominent ALK member whose life is tightly connected with Summer’s life - her father and active member of the ALK Positive Medical Committee, Ray Hall. As we got to hear and learn more about this father-daughter duo and their partnership to give Summer the longest and best life possible as an ALK patient, we were reminded of the values of family, commitment, perseverance, dedication, and above all – love.

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Patient StoriesKirk SmithPatient Spotlight, Summer Farmen, Ray Hall, Brigatinib
ALINA Trial Unveils a Paradigm Shift in the Battle Against Early Stage, Resectable ALK-Positive Lung Cancer
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 removal, followed by platinum chemotherapy. This treatment is a "one size fits all" approach to earlier stage lung cancer, without concern for the presence of the ALK mutation.

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Clinical TrialsKirk SmithClinical Trials, ALINA study, Genentech, Dr. Ben Solomon