"My Favorite (Turkey) Bolognese:" Healthy Recipe by ALKie & Chef Juli Posner

I love a bolognese sauce. It is generally an Italian meat sauce made with ground beef and pork, often even a bit of pancetta. I have made this slow simmered authentic bolognese substituting ground turkey for the beef and pork and it doesn’t miss a beat, its just healthier for you!

If you love an Italian inspired dish, this sauce will be one of your favorites. Great for pasta, lasagna, or even over zucchini noodles. Make extra. It freezes beautifully.

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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 Europe, there are several patient organizations and groups that advocate for ALK-positive patients limited to their own countries.

The size of these associations and groups varies greatly from country to country - from 25 to over 550 members.

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Pediatric ALK Spotlight Interview with mother and caregiver Ashley Sitorius, Hampstead, North Carolina

We interviewed Ashley Sitorius, 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 a driver mutation. Among many things, we discussed Deliah’s (and the family’s) journey in navigating this devastating diagnosis, how she has been able to advocate for Deliah’s treatments (some of them not officially approved for pediatric cancer), and her future hopes for pediatric ALK cancer.

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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 the stereotype. At just 52 years old, these fighters, who are usually non-smokers, shatter expectations. Yet, it doesn’t stop there – the youngest warriors, too, bear the burden of ALK-positive mutations. While a handful of kids battle ALK-positive lung cancer, an even greater number grapple with foes like lymphoma, sarcoma, and brain cancer, all stemming from the ALK-positive mutation.

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The Low Country Boil: Recipe by fellow ALKie and Chef Juli Posner

This is my favorite Southern Beach Bake (even though I'm from the North). I’ve prepared this it for clients and family alike. It's great for the warm weather of summer, and it feeds a crowd. Cover the entire table with butcher paper or newspaper, set out some rolls of paper towels, some fun hot sauces, and mustards, some bowls for shells, and leave the utensils in their drawer. For this recipe we let everyone eat with their hands!

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Oncolytic Virus Research Collaboration: Memgen Inc., UMichigan, and ALK Positive, Inc.

The ALK Positive NSCLC Research Acceleration Committee (RAC) systematically reaches out to selected biotech companies with NSCLC treatments in development and/or trial.  In February of 2022, RAC member Ray Hall (father to patient Summer Farmen) wrote a letter to the CEO of Memgen Inc., introducing us and asking for a get-acquainted Zoom meeting, which occurred shortly thereafter.  CEO Greg Brown, MD, MBA, and Chief Scientific Officer Mark Cantwell, PhD let us know that they were initiating a clinical trial at Duke and Moffit Cancer Centers for their oncolytic virus drug MEM-288 for patients with solid tumors

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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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