Category: Patient & Care Partner Stories
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Amanda Bialack-Stewart
Amanda has been actively involved in ALK Positive, Inc. through creating and leading the Young ALKies Group. We interviewed her in Los Angeles, California about having been diagnosed right after giving birth to twins at the age of 36, how she manages to balance family, work, fun, and self-care as a patient.
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Rich Gopen
Rich Gopen is an ALK patient and one of our match donors for Lung Cancer Awareness Month (LCAM). We interviewed Rich about his journey with ALK+ lung cancer, what motivates him, and his hopes for the future.
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Matt & Stephanie McAvin
Matt and Stephanie Mcavin were recently featured in Genentech’s Biomarker Testing Campaign that was filmed during the ALK Summit in Nashville. We interviewed them about their story living with an ALK+ cancer diagnosis, juggling Matt’s diagnosis with caring for their family of three teenagers, and their advocacy in getting the word out on the importance…
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Patient Spotlight Marc Muskavitch Boston area, Massachusetts, USA
Marc Muskavitch is an ALK patient, Board member for ALK Positive, Inc., and one of the leading members of the ALK Positive Medical Committee. We interviewed him on his journey with ALK+ lung cancer so far, his work with the Medical Committee, and what most excites him about the future of ALK+ cancer treatments and…
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PATIENT SPOTLIGHT: Xavier Chen, Paris, France
1. Tell us a little about your background – personal and professional – and your journey with ALK+ lung cancer so far. I am a 61-year-old French citizen of Chinese origin, now living in Paris. Beforemy diagnosis, I was living in Chiangmai, a northern city of Thailand, in semi-retirement after a very fulfilling career successively…
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First two weeks on NVL-655 clinical trial: Field Research for the Clinical Trials Committee
I 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…
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Dr. Sydney Barned
We interviewed Dr. Sydney Barned – a medical doctor, ALK patient, and very active lung cancer advocate. We learned about her personal journey with ALK+ lung cancer, how lung cancer has also affected other members of her family, and, more importantly, her tireless involvement in lung cancer advocacy, some of which has already resulted in…
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Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania
When we decided to interview Summer Hall Farmen about her personal journey– we didn’t know we were in for a treat. When we decided to interview Summer Hall Farmen about her personal journey (that includes being a mom to an adult son with severe cerebral palsy), her journey with ALK-Positive lung cancer, as well as…
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Pediatric ALK Spotlight Interview with mother and caregiver Ashley Sitorius, Hampstead, North Carolina
We interviewed , mother and caregiver of 11-year-old Deliah, who was diagnosed with ALK-positive brain cancer when she was just 7. ALK can actually appear in many pediatric cancers as a driver mutation. Among many things, we discussed Deliah’s (and the family’s) journey in navigating this devastating diagnosis, how she has been able to advocate…
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Dan and Brittany Wilson
Both Dan (the ALK patient) and Brittany (the spouse-caregiver) are actively involved in ALK Positive. We interviewed them both in their home city of Philadelphia, Pennsylvania, about their background, their life with ALK, and about how their volunteer activity has enriched their lives.
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Patient Spotlight: Marc Rosenzweig, West Bloomfield, Michigan
We interviewed Marc Rosenzweig, a long-term ALK patient and founder of the ALKtALK program that has become a wonderful resource bringing the ALK community closer. 1. Tell us a little about yourself, your personal and professional background, and your journey with ALK-positive lung cancer so far. I am a proud father of two sons, Jacob…