With the cold weather upon us ( and the holidays right around the corner), I love making a one-pot meal that's great the "day of”, and only gets better day-by-day….. That is, if your family doesn’t devour it in one sitting! Having it be super healthy is an extra added bonus! For this soup, which is more like a stew, a little crusty bread on the side is really all you need.
Read MoreNVL-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. This brain-penetrable drug not only addresses the typical ALK mutation, but it also targets compound mutations that tend to occur when there is tumor progression.
Read MoreMore participants = more data = better research = more life!
We invite you to complete a patient survey/registry specific to ALK-positive lung cancer. This is an IRB approved professionally study conducted by researchers at University of Washington and paid for by ALK Positive Inc. All data is de-identified, and will inform oncologists, researchers, patients and advocates. The study launched October 6, 2022. Our target is at least 1000 participants!
“I am a sister, an aunt, and a professional counselor. Until November 2021, I was taking care of my mother, who had Parkinson’s dementia. My mother was already advanced in her dementia when I was hospitalized at age 44 with a collapsed left lung. It was 3 months before I was diagnosed and began treatment for stage IV ALK-positive NSCLC. . . Each day I practice acceptance of what is and cultivate hope for what can be.”
Read MoreJuli Posner is a personal chef on Long Island, New York, diagnosed with ALK-Positive lung cancer in January of 2020. Formerly the Producer of a PBS network cooking show, she now concentrates on her personal clients’ individual culinary needs and is always looking to make eating healthy and exciting without sacrificing flavor. A born “LIVE TO EAT”er, Juli is thrilled to be part of the newsletter team. Follow Juli’s Instagram @apracticalchef
Read MoreA common problem that we face is that cancer becomes resistant to our TKIs (Crizotinib, Brigatinib, Alectinib, Ceritinib, and Lorlatinib) over time. There are two known mechanisms of resistance so far. One is for the cancer cells to activate an alternative bypass pathway such as EGFR, cMET, KRAS, or AXL to allow cancers to continue to grow.
Read MoreImugene’s CF33, or Vaxinia, is a modified DNA virus of the Poxviridae family developed by Professor Yuman Fong at the City of Hope Comprehensive Cancer Center in Los Angeles. Vaccinia, or pox, viruses have a track record of safe use in millions of humans, as the original variant was the active constituent of the vaccine that eradicated smallpox, and first proved able to kill cancer cells in 1922. CF33 has the potential to act as both a gene therapy delivery vehicle and an oncolytic (cancer-killing) agent.
Read MoreClinical trials are studies that are done in humans to test a new treatment. Long before a clinical trial, a host of “pre-clinical” studies must test the feasibility, safety, and effectiveness of a new treatment. Preliminary work involves chemistry to develop a compound that can be manufactured and has the potential to inhibit cancer growth. That compound is then tested for safety and effectiveness.
Read MoreWe are excited to welcome Dr. Kenneth Culver as our first Director of Research & Clinical Affairs Dr. Culver worked for 20 years at Novartis Oncology where he contributed to the development of 12 compounds including ceritinib for ALK+ NSCLC. In his last role, he served as Head, US Thoracic Oncology Clinical Strategy and Lead for the Center of Excellence for Immuno-Oncology for US Clinical Development and Medical Affairs. Most recently, he was the Global Medical Affairs Leader for the Cell and Gene Oncology program at GlaxoSmithKline.
Read MoreThe ALK Positive annual summit was once again a huge success! This year the event was held both in Denver, Colorado and virtually (online). We had 250 individual registrations in-person and 850 virtual attendees. Check out or collection of photos from different days of the event. Look for news in the coming months about the 2023 ALK Summit - and we hope to see you there in person! #strongertogether
Read MoreNumerous tributes were written in the days and weeks following Gina’s passing in early June. This outpouring of love came as no surprise to those of us who were fortunate enough to know her. If you spent even a little time in the ALK Positive lung cancer world over the last five years, chances are very high that you knew of Gina. For the past three years she has served as the volunteer president of ALK Positive, Inc.,
Read MoreEmily Venanzi is an active member of our Medical Commitee (with particular involvement in the Research Review Panel selecting which research projects to fund) as well as our Research Accelaration Committee. As a patient, she is an interesting case, as she "jumped" straight on a clinical trial as her first line of treatment, which she's still currently on. We interviewed Emily to find out more about her, her background, and what research developments give her the most hope for the future.
Read More"Going to ASCO was a great opportunity to network and represent the organization, help move ALK to the top, and let people know who we are. I feel it was a productive conference, and we look forward to continuing better relationships with everyone. As a patient-led organization, it is important for us that they see us and know that we are representing all ALK patients and their families to help with more ALK research."
Read MoreThe Phase 1/2 trial of Nuvalent, Inc.’s NVL-655, the fourth generation ALK TKI, has begun at Sarah Cannon Research Institute in Nashville, soon to be followed by additional locations. For patients currently on Lorlatinib, NVL-655 provides a hope-filled option for those who test positive for certain mutations that are common upon progression on Lorlatinib. The trial is also open to a range of patients described below that are progressing after other treatment options.
Read MoreHere are a few of the latest highlights of what our nonprofit has been up to since the last update: Our Research Review Panel has been working tirelessly to complete the process of selection of our 2022 Research Grant Awards. As of the time of this writing, successful applicants from the first round of applications are going through the second round in which full research proposals have been submitted and are currently being reviewed and assessed by the Research Review Panel and our independent scientific advisors
Read MoreOn July 14, 2022, the Food and Drug Administration approved crizotinib (Xalkori, Pfizer Inc.) for adult and pediatric patients 1 year of age and older with unresectable, recurrent, or refractory inflammatory anaplastic lymphoma kinase (ALK)-positive myofibroblastic tumors (IMT).
Read MoreFor those diagnosed with advanced lung cancer, there is often the question of how lifestyle changes can improve the prognosis. A unique study in Italy called EXcellenT will measure how supervised exercise affects outcomes. Those who have a positive biomarker, like ALK, can participate if they are on their first or second tyrosine kinase inhibitor (TKI). Participants will be randomly divided into two groups, the experimental group and control group. The experimental group will be assigned a home-based exercise program that is directed and monitored by entries in a smartphone app.
Read MoreThose in the ALK community fear the day when progression occurs after Lorlatinib, the “last” ALK inhibitor available. Although there are effective treatments after Lorlatinib, there is no standard treatment. Without a specified FDA-approved treatment, people must face Lorlatinib resistance without knowing the best strategy.
Read MoreNancee has been an ALK patient for the last 6 years, and she is an incredible member of the ALK community who is devoting her time and resources to multiple projects and endeavors within ALK Positive, Inc. This year, she is the Chair of ALK Summit 2022 which we are all looking forward to. We wanted to know more about her life and background and what motivated her to volunteer and make a difference.
Read Moreoth the ALK Positive Board of Directors and the ALK Positive Committees are comprised of volunteer members from the ALK Positive Support Group, all ALK-positive patients, or caregivers themselves. The Board, Committees, and our new CEO, are all working together to improve the life expectancy and quality of life of ALK-positive cancer patients worldwide. Here are a few of the latest highlights of what our nonprofit has been up to since the last update:
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