Patient & Care Partner Stories
Our global community of patients and care partners is 8,000+ members strong! Here you can read some of our personal stories—filled with experiences and emotions you may relate to and inspirational insights for fueling hope and resilience.
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Dana Querido
We interviewed patient and ALK Positive volunteer Dana Querido about her journey with ALK+ lung cancer and her active involvement with the ALKtALK Healing Arts, Death Cafe, and more.
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Jeff Sturm
During the Thanksgiving holiday, over a liter of pleural fluid was withdrawn via needle from my right chest space. I had just finished my third cycle of Carboplatin, Pemetrexed, and Lorlatinib after almost ten years of TKIs alone. The fluid first became evident on a PET scan and was classified as moderate effusion. I didn’t…
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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 […]
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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 […]
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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 […]
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PATIENT SPOTLIGHT: Andrej Krivda, Wettingen, Switzerland
We interviewed fellow ALKie Andrej Krivda on his very interesting journey with ALK+ lung cancer and all the unexpected twists and turns he’s had to navigate since diagnosis. Andrej is […]
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Introducing ALK Positive Italia An interview with Founder, Patty Saccenti
ALK Positive, Inc has introduced a section in our newsletter to feature international (non-US) ALK patient groups/organizations. If you would like your group/organization to be featured in a future newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org In this issue, we are introducing ALK Positive Italia and have interviewed the founder, Patty Saccenti.
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PATIENT SPOTLIGHT: Debbi Martinez, New Jersey, USA
Member and fellow ALKie Debbi Martinez is the volunteer working behind the scenes with ALK Positive’s Kindful fundraising platform and doing a great job at that. For this year’s Lung […]
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PATIENT SPOTLIGHT: Ruby Blow, Atlanta, GA, USA
Please enjoy our interview with the wonderful and courageous Ruby Blow! 1) Share with us a little bit about yourself, including your personal life, your professional background, and your journey […]
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PATIENT SPOTLIGHT: Emily Venanzi, Newton, Massachussetts
Emily 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 […]
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PATIENT SPOTLIGHT: Nancee Pronsati, Golden, Colorado, USA
Nancee 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 […]
PATIENT & CARE PARTNERS
Want to share some inspiration?
We invite patients and care partners to share their own stories of life impacted by ALK+ cancer. Let others know they’re not alone.
