Category: Patient & Care Partner Stories
- ALK Experts
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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 […]