EDITORS 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.
Read MoreThe ALK world and more broadly the lung cancer world lost one of its most precious and vocal voices on November 15, 2021, ironically during Lung Cancer Awareness Month and only days before her 62nd birthday. Linnea Olson set a paradigm in the treatment of lung cancer and left a void that is hard to fill. Linnea served as a valued Board member of ALK Positive Outreach Management Group (what is now ALK Positive, Inc.) and continued to be a member of the ALK Positive, Inc. Clinical Trials Committee.
Read MoreWe had a wonderful discussion with long-time member, Medical Committee Chair, Board member and donor, Colin Barton, about his background and personal history, his attitude to life, the achievements of the Medical Committee which he has been chair continuously since 2017, and his hopes and excitement for the future of ALK-positive cancer treatments.
Read MoreLinnea Olsen, along with many other long-term ALK-positive lung cancer survivors, participated in clinical trials at several junctures in treatment. Linnea participated in a trial of Crizotinib, the first treatment for ALK-positive lung cancer. She joined 5 more clinical trials over the course of her illness. By enrolling in clinical trials, she was able to get advanced treatments before they were approved for general medical use.
Read More“Know thy self, know thy enemy. A thousand battles, a thousand victories”; a quote by the famous Chinese historical figure Sun Tzu. Accordingly, scientists have been working hard at understanding the fundamentals of the ALK protein.
Read MoreSo, you heard the dreaded “C” word. Your life went from being full of goals and a prosperous future to resembling a black slate. No matter how old you are, the dreaded C word gives the same devastating gut punch. I feel for you, I understand you, and I also received the devastating news. This path may feel like a never-ending chase, but hopefully we will always be one step ahead of this monstrous beast.
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
Read MoreEDITORS NOTE: A big thank you to Dr. Ou for spending his Sunday evening with our group answering these questions and sharing his vast wealth of 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 (this was the most content-heavy program we've had to date) so that it would be available for other ALK patients. Knowledge is Power!
Read MoreNovember is…National Family Caregivers Month. Statistically speaking, it is estimated that 4.6 million people in the US alone care for someone with cancer in their home. Typically, these caregivers are ill-prepared for this demanding role and only a third of caregivers report being asked by a health care provider what they need to care for their loved one.
Read MoreOur volunteers are our driving force. We could not have been where we are without them. The least we can do is honor and thank them for their contribution to the ALK Positive Support Group and ALK Positive, Inc. (our registered 501c3 nonprofit). Below is a list of all the people who are currently generously donating their time and talent to help take our various projects and initiatives forward. We are grateful to each and every one of you!
Read MoreWe interviewed our member Yuhui Hurng about her journey with ALK-positive lung cancer, her experience with ‘outside the box’ treatment options and the differences in medical care standards between Singapore where she lives and the rest of the world.
Read MoreALK Positive, Inc. became a registered 501c3 (nonprofit) organization in March 2021. Both 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 and Committees are all working together to improve the life expectancy and quality of life of ALK-positive cancer patients worldwide.
Read MoreJust in time for Lung Cancer Awareness Month, ALK Positive, Inc. is presenting a website where you or your clinician can search for clinical trials that are recruiting for ALK-positive lung cancer. ALK Positive has partnered with ClinWiki, a non-profit who provides a free web-based application to help patients with serious illnesses understand their clinical trial options.
Read MoreThe proverbial question, “what is my best treatment option?” is always on a patient’s mind. With the current treatment options available to us, ALKies, “what should we do?” comes up often. There are all the TKI options (Crizotinib, Ceritinib, Ensartinib, Alectinib, Brigatinib, and Lorlatinib), chemotherapy, radiation therapy and surgery (depending on your stage).
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