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by David Dubin
The movers and shakers in the lynch syndrome field. Join patient advocates, physicians, geneticists, genetic counselors and others in the space, as we go deep into what it's like to LIVE in a world with Lynch Syndrome genetic mutations.
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I sit down with Jean Edelstein, Lynch Syndrome patient advocate and author of Breasts a Relatively Brief Relationship and It's Really Not About You. We discuss New Jersey, family, fiber, and MRI's, you know your typical conversation. Enjoy.
I sit down with Dr Hannah Ditchfield and Professor Stefania Vicari from Longborough University to discuss social media and Lynch Syndrome, a topic not normally associated with Lynch Syndrome. Fascinating stuff. They discuss the Previvorship Project, which started in 2022, which analyzed public content on social media. 59 social media users across 4 platforms were interviewed and the findings were fascinating. New Genetics, Same Old Surgery is their newest project which we look forward to as well. Enjoy.
I sit down with Sara Kavanaugh, Lynch Syndrome patient, part of Lynch Syndrome Awareness non profit, and Connect My Variant. Sara is the overachiever in so many ways, including voiceover work, and being host of the Positive Gene Podcast. We talk about potential solutions to getting the word out about Lynch Syndrome, positivity, and Nashville hot chicken.
I sit down with Hanna Lombardi, lynch syndrome patient at Dana Farber Cancer Institute, mom of 3, who is also running the Boston Marathon to raise Lyncgh Syndreome awareness. Come for the Lynch Syndrome story, enjoy a donut or two, and stay for the guest appearance. Then go for a jog.
I sit down with Stefania Alastre as we discuss her role as Genetic Counselor at the Moffitt Cancer Center, as well as Assistant Professor at the University of South Florida genetic counseling program, and her role as Certified Medical Translator. We also talk about worm cloning, soccer and the X-Men. Enjoy!
I sit down with Dr Mev Dominguez, Project Group Leader Inherited and Familial Cancer at the University of Oslo and Director of the Predi Lynch Project. Starting in May 2025, lasting for 6 years, there are 28 partners from 16 European countries acting and working together. Liquid biopsy every year, urine, MSI plus, vaginal swabs, and stool samples will be compiled over 27 clinical centers. Important factors include social and financial acceptability. Open for lynch syndrome patients over age 35 but no cancer for the last year. A biobank will be created, and analysis will be done using AI. Everything should be followed via the Predi-lynch.edu web site.
I sit down with Laura Schneebaum, licensed mental health counselor and therapist, working with us in the hereditary cancer space. Besides the NYU linkage, we had a lot in common. We talk about trauma informed care and the quote "An abnormal reaction to an abnormal situation is normal." Laura liked my term that it gets easier, but it never gets easier.
I sit down with Richard Wu, Lynch Syndrome patient and runner in the TCS New York City Marathon. Richard didn't know about his Lynch Syndrome but was experiencing unexplained fevers, especially on trips. At 38, he was surprised to hear of his colon cancer. The immunotherapy not only cured his cancer without surgery, but seemingly the fevers have ended as well. Richard is on baby aspirin moving forward and so far so good. We look forward to cheering Richard at the NYC Marathon this weekend and a link to his page will be attached. https://aliveandkickn.salsalabs.org/2025tcsnycmarathon/p/richardwu/index.html
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The movers and shakers in the lynch syndrome field. Join patient advocates, physicians, geneticists, genetic counselors and others in the space, as we go deep into what it's like to LIVE in a world with Lynch Syndrome genetic mutations.
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