Clinical 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:
Read MoreThere are various types of chemicals that people have found to be helpful in treating cancers. The first chemotherapy drug was discovered in the 1960s and was initially used to treat lymphoma patients. During the war effort, an accident occurred in the production of mustard-gas-like agents, and researchers found that patients affected by the agent had mostly dead lymphoid and myeloid cells in their blood (these are a type of white blood cell precursors).
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 MoreDr. Charelle Samuels is an ALK patient and a professional mental health practitioner with decades of experience. She has successfully led emotional support groups and ALKtALK sessions as part of the ALKtALK program, which many members have found particularly helpful. We asked her to talk to us about her personal journey as a professional and a lung cancer patient, her dedication to supporting people in improving their mental health, and her volunteering with the ALKtALK program.
Read MoreIn February 2022, President Biden announced and laid out an ambitious agenda to boost and speed up the fight against cancer, including a national year of action on cancer screening and a new Cancer Cabinet to drive progress government-wide. President Biden announced a revival of his audacious 2016 initiative - Cancer Moonshot - that is designed to dramatically accelerate progress against cancer.
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 MoreOn the ALK Positive Support Group pages, I see photos of smiling, loving families having incredible adventures while living with an unpredictable and unrelenting illness. Our family has taken the same snapshots with my husband smiling in the center, his face showing no signs of stage 4 lung cancer. These pictures show the tremendous well of love and resilience we all tap into every day. But on some days, I look at these families and see my own weaknesses. The others seem to be managing this illness so well, so positively, while I wrestle with an obscured future.
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.
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