Rich Gopen is an ALK patient and one of our match donors this Lung Cancer Awareness Month (LCAM), which means that whatever funds you donate or raise will be doubled thanks to Rich’s and others’ generous match donations. We interviewed him about his journey with ALK+ lung cancer, what motivates him, and his hopes for the future.
Read MoreMatt 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 of biomarker testing.
Read MoreWe interviewed Amanda Bialack-Stewart about her unusual story with ALK+ lung cancer (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, and her active involvement in ALK Positive, Inc through creating and leading the Young ALKies Group.
Read MoreThose of us lucky enough to have Dr. Camidge as part of our care team have been encouraged to follow these tumor markers. Colin Barton, founder of the ALK Positive Medical Committee, has been doing so since 2018. LabCorp currently tests for these markers as part of my regular blood draws, and insurance pays for it. Presumably other diagnostic and insurance companies will do the same. The four markers are CEA (carcinoembryonic antigen/colorectal cancer), CA125 (ovarian), CA19.9 (pancreatic), and CA27.29 (breast).
Read MoreALK 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.
Read MoreMarc 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 collaborations to improve outcomes for ALK patients.
Read More1. 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 in the French Foreign Service, International Energy Agency (IEA), global energy companies BP and Equinor, and Chinese energy company ENN. Before COVID, I spent 17 years in Beijing where I worked for the aforementioned companies as senior executive.
Read MoreI 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 details on the mutations that came up with various progressions, along with all the dates. The current mutational profile was most important to the doctor for qualification to participate. My local oncologist knew Dr. Riess personally, which helped, I think, and having your oncologist touch base with a prospective trial-coordinating doctor can help open the door.
Read MoreWe 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 legislation being passed to help lung cancer patients
Read MoreWhen 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 her active involvement in our organization (Board member, ALKtALK Healing Arts program, fundraising, and Summit Committees, to name a few), we didn’t realize we were in for another treat. Summer’s interview didn’t just give us a good glimpse of her own life. It also helped us get to know another prominent ALK member whose life is tightly connected with Summer’s life - her father and active member of the ALK Positive Medical Committee, Ray Hall. As we got to hear and learn more about this father-daughter duo and their partnership to give Summer the longest and best life possible as an ALK patient, we were reminded of the values of family, commitment, perseverance, dedication, and above all – love.
Read MoreWe interviewed Ashley Sitorius, 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 for Deliah’s treatments (some of them not officially approved for pediatric cancer), and her future hopes for pediatric ALK cancer.
Read MoreBoth Dan (the ALK patient) and Brittany (the spouse-caregiver) are actively involved in ALK Positive and are also this year’s ALK Summit Chairs coordinating our Summit in their home city of Philadelphia, Pensylvannia. We interviewed them both about their background, their life with ALK, and about how their volunteer activity has enriched their lives.
Read MoreLong-term ALK patient and founder of the ALKtALK program that has become a wonderful resource bringing the ALK community closer. Marc lives with his wife Carolyn in West Bloomfield, MI. His cancer life started in 2013 when he was diagnosed with Stage 3b Hodgkin’s Lymphoma. He went through 6 months of chemotherapy until he started coughing up blood 7 months later after his last Hodgkin’s treatment. Thats when he was diagnosed with Stage 4 ALK Positive Lung Cancer in November 2013.
Read MoreWe 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 the very first person to enter the Nuvalent NVL-655 clinical trial in Spain and one of the first patients to take part in the trial in all of Europe, and we were very interested in his perspective. He also happens to have a fascinating personal history. Enjoy the read!
Read MoreMeet Patty Saccenti – a retired throracic surgeon, mother of three, caregiver to her ALK patient husband, and one of our most active volunteers and advocates both within ALK Positive, Inc. in the US and in her country and region of origin, Italy and Europe. “In September 2017, we were just back in Rome - where we live - having just come back from our summer vacation, and we were watching TV after putting our three children to sleep. Suddenly my husband felt something under his finger near his neck and asked me, "what do I have here?"
Read MoreMember 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 Cancer Awareness Month, we wanted to honor a volunteer that is not visible by being at the forefront of operations, but is just as invaluable in helping our fundraising efforts go smoothly and seamlessly.
Read More“I am a sister, an aunt, and a professional counselor. Until November 2021, I was taking care of my mother, who had Parkinson’s dementia. My mother was already advanced in her dementia when I was hospitalized at age 44 with a collapsed left lung. It was 3 months before I was diagnosed and began treatment for stage IV ALK-positive NSCLC. . . Each day I practice acceptance of what is and cultivate hope for what can be.”
Read MoreNumerous tributes were written in the days and weeks following Gina’s passing in early June. This outpouring of love came as no surprise to those of us who were fortunate enough to know her. If you spent even a little time in the ALK Positive lung cancer world over the last five years, chances are very high that you knew of Gina. For the past three years she has served as the volunteer president of ALK Positive, Inc.,
Read MoreEmily 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 Committee. As a patient, she is an interesting case, as she "jumped" straight on a clinical trial as her first line of treatment, which she's still currently on. We interviewed Emily to find out more about her, her background, and what research developments give her the most hope for the future.
Read MoreNancee 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 projects and endeavors within ALK Positive, Inc. This year, she is the Chair of ALK Summit 2022 which we are all looking forward to. We wanted to know more about her life and background and what motivated her to volunteer and make a difference.
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