AliveAndKickn Podcast - Dr Timothy Yen
AliveandKick'n the podcast
I sit down with Dr Timothy Yen, Gastroenterologist and Clinical Informaticist at Loma Linda University. Dr Yen was building the Lynch Syndrome program at Loma Linda when he discovered Epic Cosmos, where the Epic's Care Everywhere could be used for research, regardless of the health system. Epic Cosmos unlike other modules, isn't built around claims data. Now Dr Yen can pull de-identified data from thousands of patients, aggregate statistics and more. Cosmos is free for a health system to join, but they just need Care Everywhere. It also has a system to...
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AliveAndKickn Podcast - Marina Udier
AliveandKick'n the podcast
I sit down with Marina Udier, CEO of Nouscom, a Swiss company working on the Lynch Syndrome vaccine. Nous209 is designed to intercept tumors in Lynch Syndrome cancers. The 209 comes from the frameshifts of neoantigens, whether sporadic or hereditary. Idea is to educate the T-cells before cancers start forming. The data at AACR presented was very promising. They are also running a study on metastatic colorectal cancer patients, mostly without Lynch Syndrome, but MSI high. So how many people are tested positive for Lynch Syndrome each year? Next steps...
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AliveAndKickn Podcast - Dr Aasma Shaukat
AliveandKick'n the podcast
I sit down with Dr Aasma Shaukat, Gastroenterologist and Professor of Population Health, who is also trained in Epidemiology and Clinical Research, and Director of GI Outcomes Research at NYU Langone Health, Grossman School of Medicine. We talk about progress in healthcare fields including gastroenterology. We talk microbiome (I compared my digestive tract to the ocean). We did talk colonoscopy prep in quite a bit of detail. We also talk about screening rates in the NYC area< C5 and how fortunate we are to work and live in an area that really tries to be inclusive...
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AliveAndKickn Podcast - Dr Matthias Kloor
AliveandKick'n the podcast
I sit down with Dr. Matthias Kloor, Acting Medical Director Applied Tumor Biology at Heidelberg University. We discuss the thought process followed by the hurdles faced in trying to get a Lynch Syndrome vaccine, through the phases, to potentially the proverbial bedside. We discussed collaboration with the NCI in bringing this and other projects to market. We also talk about the European Hereditary Tumor Group, whose conference this year is also in Heidelberg. EHTG is a great group, one that has embraced the advocacy community, similar to CGAIGC and InSIGHT.
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AliveAndKickn Podcast - Sandra and Javier Corrales
AliveandKick'n the podcast
I sit down with Sandra and Javier Corrales, who share their Lynch Syndrome story. Javier has been open with his diagnosis so his family can be proactive in their care. Sandra, who has a history of cancer in her family as well, has been the teammate in this process every step of the way. With the Lynch Syndrome diagnosis, they now see a path forward. They share how they deal with family, including the kids, and having age-appropriate conversations. Besides participating in AliveAndKickn's Living with Lynch annual program, they coordinated a community...
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AliveAndKickn Podcast - Dr Jen Hartstein
AliveandKick'n the podcast
I sit down with Dr Jen Hartstein, lynch syndrome previvor and clinical psychologist in New York City. We both hope that others can take away something from us that helps them with their day and daily lives. She also has a media career talking about life, mental health and her own company working with companies to help them identify and work with neurodiverse populations. How do we discuss all of the stuff being thrown at us during these trying times? How do we remain informed without being overwhelmed? Finding communities and not getting stuck in our own heads may...
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AliveAndKickn Podcast - Junius Nottingham Jr
AliveandKick'n the podcast
I sit down with Junius Nottingham Jr, founder of JNottGTT, a non-profit for Lynch Syndrome awareness. Junius tells the story of his son Jeremy, who was a secret service agent and so much more, who passed at age 30. Junius discovers his own colon cancer after his son's diagnosis, but it was found early, and he was ok just after surgery. As a parent, I feel that level of guilt and responsibility, and I applaud Junius for staying in this, and using his platform to help others. Junius reminds us that it's ok not to be ok, and thanks God for keeping him going, even when...
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AliveAndKickn Podcast - Dr William Oh
AliveandKick'n the podcast
I sit down with Dr William Oh, newly appointed Precision Medicine Director at Yale Cancer Center. Dr Oh is a Medical Oncologist who has focused mainly on Genitourinary cancers, so we of course talk about prostates. We discuss high risk populations and of course finding cancer early, knowing family histories and decision making about having surgery.
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AliveAndKickn Podcast - Dr Mohammad Ali Abbass
AliveandKick'n the podcast
I sat down with MSK's colorectal surgeon Dr. Mohammad Ali Abbass just before CGAIGC, the Collaborative Group of the Americas on Inherited GI Cancers. At CGA, Dr Abbass moderated a discussion around colon resection for Lynch Syndrome patents. Dr Abbass and I also discussed a study around the outcome of surgical decisionmaking for those who have had germline testing before surgery vs those that have not. Of course we talk aspirin, vaccines and exercise and our lives in the "Lynch Syndrome bubble" and while some changes have been glacial, others have moved forward more...
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AliiveAndKickn Podcast - Cathy Nobil-Dutton
AliveandKick'n the podcast
From a warm summer day, I sat down with Cathy Nobil-Dutton, lynch syndrome survivor, wellness coach and more. Cathy is the only person I've met who had almost melanoma, sort of. Our conversation is all over the place, as it should be when discussing living with lynch syndrome. Wouldn't have it any other way.
info_outlineI sit down with Dr Asaf Maoz, Medical Oncologist at Dana Farber Cancer Institute, who I recently saw at the LynkedIn and Scientific Symposium. We discussed what brought Dr Maoz to this point, discussing immunology, T-cells, receptors and targets. Dr Maoz confirmed that not all Lynch cancers are MSI-H. This year, for the 5 year anniversary of the patient LynkedIn conference, they had the scientific symposium the day before. Dr Michael Foote from MSK presented some data on cancer risk after immunotherapy. I appreciate the debates and conversations that take place at the symposiums, and how data will continue to drive innovation, but like anything, until you generate the data you can't hypothesize and stratify. Of course we ventured into the cancer vaccine space and the unique molecular features of Lynch Syndrome and the potential to prevent cancer in the future. Takeaway is to keep up with screening regardless. We also discussed language barriers to healthcare overall, not just Lynch Syndrome, including how AI is being looked at in order to potentially find tidbits that are missed.