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.
Read MoreI 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.
Read MoreI’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.
Read MoreThe 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
Read MoreThe 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.
Read MoreIn 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!
Read MoreThe 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.
Read MoreThe 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!!
Read MoreTo 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.
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. 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.
Read More(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).
Read MoreHighly 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.
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!
On 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 MoreEDITORS NOTE: A big thank you to Dr. Alice Shaw for spending her Sunday evening with our group answering these questions and sharing her vast wealth of ALK-specific knowledge. A special thanks to Marc Rosenzweig for creating and scheduling the ALKtALK programs and a HUGE thank you to Alice Chou for graciously committing her time to transcribe this ALKtALK so that it would be available for other ALK patients. Knowledge is Power!
Read MoreIn recent years, a signal pathway called HIPPO, which is important in angiogenesis (blood vessel growth), has become important for the ALK cancer realm. There has been accumulating evidence that a protein called YAP (Yes Associated Protein-1) can prevent TKI-resistant cells from developing resistance in vitro and in vivo (in laboratory experiments and in cell experiments). This pathway is very important as there is evidence that it is very well-preserved in evolution - there are homologs to humans in Drosophila (fruit flies).
Read MoreWASHINGTON, DC (January 27, 2022) — LUNGevity Foundation is partnering for the third time with the patient-led registered nonprofit organization ALK Positive to support the ALK-Positive Lung Cancer Research Award Program. This year, the patient oncogene group will potentially fund research projects totaling up to $1.5 million over two years—their largest funding to date. The ultimate goal of the research is to transform ALK-positive lung cancer into a chronic or curable condition.
Read MoreHere are a few of the latest highlights of what our nonprofit has been up to since the last update:
• A big, heartfelt thank you to everyone who has donated or fundraised for ALK Positive, Inc. in 2021. Our Lung Cancer Awareness Month and End-of-Year Giving campaigns raised almost $1.5M in November and December thanks to the enthusiastic participation of members from all over the world and the generous matching donations of a number of committed donors.
Read MoreHUGE Announcement from the University of Michigan's Rogel Cancer Center - this $7.6 million gift from from Judith L. Tam and the Richard Tam Foundation may be the largest made to-date specifically for ALK positive research. #ResearchSavesLives
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