Patient and Caregiver Spotlight: Dan and Brittany Wilson Philadelphia, Pennsylvania, USA

Both Dan (the ALK patient) and Brittany (the spouse-caregiver) are actively involved in ALK Positive and are also this year’s ALK Summit Chairs coordinating our Summit in their home city of Philadelphia, Pensylvannia. We interviewed them both about their background, their life with ALK, and about how their volunteer activity has enriched their lives.

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Instructions and Call for Patient Participation in The University of Michigan Judith Tam ALK Lung Cancer Research Initiative

The University of Michigan Judith Tam ALK Lung Cancer Research Initiative is recruiting ALK positive NSCLC patients for extensive and sustained studies of the course of each individual’s disease. Their research is enabled by the continuing donation of patients’ blood samples, tumor tissue samples, and/or malignant fluids, as each may be available over time for individual patients. The following steps are required for a patient to participate in the study.

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Clinical Trials for ALK-positive Cancers - Are They for Me?

The decision to enroll in a clinical trial requires a real understanding of what is being studied and how you will participate in the study. It is important to remember that clinical trials have been instrumental in developing all treatments for ALK-positive cancers. Many of our longest survivors have participated in clinical trials of treatments that are now the standard of care.

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Patient Spotlight: Marc Rosenzweig, West Bloomfield, Michigan

Long-term ALK patient and founder of the ALKtALK program that has become a wonderful resource bringing the ALK community closer. Marc lives with his wife Carolyn in West Bloomfield, MI. His cancer life started in 2013 when he was diagnosed with Stage 3b Hodgkin’s Lymphoma. He went through 6 months of chemotherapy until he started coughing up blood 7 months later after his last Hodgkin’s treatment. Thats when he was diagnosed with Stage 4 ALK Positive Lung Cancer in November 2013.

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Interview with Dr. Ken Culver, ALK Positive, Inc. Director of Research & Clinical Affairs

In only seven months as our Director of Research and Clinical Affairs, Dr. Ken Culver has made a tremendous impact with our organization. With over three decades of work in pediatrics, immunology, pharmaceutical drug development for cancer treatment, as well as laboratory research in 1990 that contributed to the first ever human gene therapy trial for the treatment of children with adenosine deaminase (ADA) deficiency. It's an inspiring interview with Ken - and we are fortunate to have him with us in a leadership position. Be Inspired!

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Call for Patient Participation in The University of Michigan Judith Tam ALK Lung Cancer Research Initiative

The University of Michigan Judith Tam ALK Lung Cancer Research Initiative is recruiting ALK positive NSCLC patients for extensive and sustained studies of the course of each individual’s disease.  Their research is enabled by the continuing donation of patients’ blood samples, tumor tissue samples, and/or malignant fluid as each may be available over time for individual patients. 

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HEALTHY RECIPE: Salmon Piccata over Pasta

Our “Practical Chef” and fellow ALKie, Julie Posner shares one of her favorite healthy recipes. “I love Salmon, and I love lemon. This quick fancy ,but easy, recipe incorporates both. Crispy pan Sautéed Salmon tossed in a quick lemon butter sauce will give you a restaurant worthy dinner that is on the table in less than 30 minutes! Who wouldn’t love that? ( serves 4)

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PATIENT SPOTLIGHT: Andrej Krivda, Wettingen, Switzerland

We interviewed fellow ALKie Andrej Krivda on his very interesting journey with ALK+ lung cancer and all the unexpected twists and turns he’s had to navigate since diagnosis. Andrej is the very first person to enter the Nuvalent NVL-655 clinical trial in Spain and one of the first patients to take part in the trial in all of Europe, and we were very interested in his perspective. He also happens to have a fascinating personal history. Enjoy the read!

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You Can Find a Clinical Trial with the Help of ALK Positive

At any juncture in treatment, those with ALK Positive cancers are faced with hard choices.  Whether you are first starting treatment or you are changing treatment due to progression or side effects, multiple options may be available. At these critical decision points, a clinical trial could be an excellent choice. You may trust your doctor to refer you to a clinical trial, but it is nearly impossible for any doctor to be aware of all the clinical trials that are available for ALK.

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The ALK Positive Lung Cancer Registry and Survey Need You!!

The ALK Positive Lung Cancer Registry and Survey is a study that was launched in October 2022, with the purpose of helping provide real-world answers to all those questions. It is an IRB approved study conducted by University of Washington, but funded and driven by the ALK Positive organization. There are already almost 1,000 patients registered, and over 700 have answered multiple survey forms. However, the researchers will need thousands more global participants to answer most of these questions!!

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ALK Positive and LUNGevity Foundation Announce Recipients of the 2022 ALK-Positive Research Awards

To transform advanced ALK-positive lung cancer into a chronic or curable disease, ALK Positive to award $1.75 million through their research award program

Patient organization ALK Positive, in partnership with LUNGevity Foundation, announced the 2022 recipients of the ALK Positive/LUNGevity ALK-Positive Lung Cancer Research Awards. The grant monies, totaling $1.75 million, were raised by ALK Positive and represent patients with ALK-positive non-small cell lung cancer themselves directly influencing the direction and focus of the research that affects their lives.

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Caregiver and Advocate Spotlight: Patty Saccenti, Rome, Italy

Meet Patty Saccenti – a retired throracic surgeon, mother of three, caregiver to her ALK patient husband, and one of our most active volunteers and advocates both within ALK Positive, Inc. in the US and in her country and region of origin, Italy and Europe. “In September 2017, we were just back in Rome - where we live - having just come back from our summer vacation, and we were watching TV after putting our three children to sleep. Suddenly my husband felt something under his finger near his neck and asked me, "what do I have here?"

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The New ALK Inhibitor: NVL-655 Trial Expands to Europe!

NVL-655 is a new experimental ALK inhibitor that is designed to treat ALK cancers, especially those that have become resistant to ALK inhibitors like lorlatinib, alectinib, and brigatinib. The study of this new drug is underway! Clinical trial sites in the U.S. include Orange, California; Denver, Colorado; Boston, Massachusetts; Detroit, Michigan; New York, New York; Nashville, Tennessee; and Seattle, Washington. The expansion to Europe includes sites in Toulouse Cedex, France; Villejuif, France; and Barcelona, Spain.

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Pearl Couscous and Lentil Salad Recipe By chef, fellow ALKie, Juli Posner

This salad is so colorful and fresh, it looks gorgeous on any buffet table.

It can be a side, yet it doubles as the main event if you add your favorite protein! (Shrimp works beautifully).

With lots of texture from crunchy cucumbers, salty brininess from Kalamata olives, and sweetness from golden raisins, it's a virtual party in your mouth!! It's certainly a favorite of mine as well as many of my clients!

*Serves 4-6 ; Store in the fridge for up to a week. 

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Groups Award Two Grants for ALK-positive Lung Cancer Research

(December 28, 2022) – ALK Positive Inc. (ALK Positive) and The Lung Cancer Research Foundation (LCRF) announce funding of two ALK-positive related lung cancer projects. These grants, totaling $500,000, are awarded to researchers whose projects are focused upon transforming care and improving outcomes for patients with ALK-positive non-small cell lung cancer (NSCLC).

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Moderna’s Cancer Vaccine Program

Highly successful Covid vaccines have raised the question of ‘why not cancer vaccines?’, a question of great interest and financial contribution for the ALK Positive NSCLC community in recent years. Somewhat under the radar of our members is Moderna, Inc.’s multi-cancer clinical trial for their personalized mRNA vaccine that started in 2017. The trial is open to ALK NSCLC patients after progressing on TKIs, and it is based on the same platform as their approved Covid mRNA vaccine. It is currently in a multiple-arm Phase 1 trial and a randomized, fully enrolled Phase 2 trial.

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Patient Spotlight – Debbi Martinez, New Jersey, USA

Member and fellow ALKie Debbi Martinez is the volunteer working behind the scenes with ALK Positive’s Kindful fundraising platform and doing a great job at that. For this year’s Lung Cancer Awareness Month, we wanted to honor a volunteer that is not visible by being at the forefront of operations, but is just as invaluable in helping our fundraising efforts go smoothly and seamlessly.

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