Honoring the memory of Linnea Olson: long-term ALK survivor, clinical trial pioneer, fierce lung cancer advocate, loving mother of three
The 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.
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Patient Spotlight: Colin Barton, Denver, Colorado
We 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.
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Clinical Trials Can Help Those with ALK Lung Cancer Get State of the Art Treatment
Linnea 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.
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Understanding ALK structural data
“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.
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ALK-positive Best Care 101
So, 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.
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STRONGER TOGETHER: The Latest From ALK Positive, Inc.
Here 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.
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$7.6M Gift Launches New Lung Cancer Research Initiative at University of Michigan's Rogel Cancer Center
HUGE 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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Dr. Ou at ALKtALK
EDITORS 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!
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Honoring our Caregivers
November 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.
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Honoring our Volunteers
Our 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!
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Patient Spotlight: Yuhui Hurng, Singapore
We 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.
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The latest from ALK Positive, Inc.
ALK 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.
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Announcing ALK Positive ClinWiki, A Better Way to Search for Clinical Trials
Just 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.
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Sequencing treatment in ALK-positive lung cancer
The 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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ALK Positive Micro-Documentary "Stronger Together" Available on Youtube
You can share this powerful micro-documentary featuring four women living with ALK positive lung cancer, as well as leading lung cancer researchers, Dr. Christine Lovly and Dr. Vincent Lam.
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FUNDRAISING GUIDE & TIPS FOR LUNG CANCER AWARENESS MONTH
FUNDRAISING GUIDE & TIPS FOR LUNG CANCER AWARENESS MONTH November is Lung Cancer Awareness Month (LCAM) -- an excellent time of year to raise awareness and funds for research. LCAM is ALK Positive’s largest fundraising campaign of the year. We’ve set a goal to raise $1,000,000 in 2021. A huge thank you to the generous match donors who have pledged $333,000 in matching funds!
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Identifying and understanding EML4-ALK variants and TP53 mutations to optimize treatment of ALK fusion positive (ALK+) NSCLC
This recent review from August, 2021 highlights what we know about EML4-ALK variants and TP53 mutations clinically. Authors are comprised of researchers in the US (Orange, CA and Detroit, MI) and Japan (Kawasaki, Kanagawa).
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Patient Spotlight Debra Montague, Watchet, United Kindgom
In this very interesting interview, Debra Montague, Chairman and Founder of ALK Positive UK (https://www.alkpositive.org.uk/), talks to us about starting and establishing the UK-based charity from the ground up, their advocacy efforts, their work on lessening treatment and testing disparities with other developed countries, and her future hopes and dreams for all ALK-positive patients in the UK, the US, and worldwide.
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ALK-positive Clinical Trials Are Not Just for People in the United States
If you are at diagnosis or at a juncture in treatment, an ALK-positive lung cancer clinical trial may help you receive state of the art treatment. Although many clinical trials for ALK-positive lung cancer have sites in the US, ALK Positives around the world have multiple clinical trial options.
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International Ambassadors Survey
An informal survey was conducted with our ALK International Ambassadors, volunteers from various countries who are passionate about sharing their experiences with others. A total of 22 countries were represented in this survey. In addition to the US, European nations were well represented, as were Australia and New Zealand.
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