AliveandKick'n the podcast

I sit down with Dr Hannah Ditchfield and Professor Stefania Vicari from Loughborough 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 Surgeries 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...

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/richar...

I sit down with Dr Yvonne Bombard, scientist focusing on improving access to genetic testing for personalized medicine, at Unity Health in Toronto, as well as being founder and CEO of The Genetics Advisor.  Dr Bombard is a problem solver at heart, always looking for ways to clear access for others.  Genetics Advisor, which has been around for many years, is meant to augment and/or support genetic counseling.  People using the tool have significantly high levels of knowledge, even compared with clinician driven sessions.  Studies also show it saves provider consult time by having the patients being empowered and...

I sit down with Dr Magali Svrcek, Professor of Pathology at the University of Sorbonne in Paris, and she discusses her role as a GI Pathologist.  Dr Svrcek discusses Microsatellite Instability, digital tools and Immunohistochemistry.  Dr Svrcek wrote her script in English, so I in turn wrote my introduction and closing en Francais.  I hope my French is ok.  With fewer Pathologists, especially internationally, digital pathology could be a solution.  In working with Owkin, the collaboration, MsIntuit, an AI diagnostic tool to detect MSI, and is the first to be CE marked.   Colorectal cancer is experiencing an increase internationally as west...

I sit down with Dr Luis Diaz Jr, physican scientist at Memorial Sloan Kettering, and we share some history of mismatch repair, lynch syndrome and the evolution.  Of course we talked about the primary rectal cancer study where they showed immunotherapy was curative for MMR/MSI High tumors.  A second study for multiple cancer locations had 85% response rate and 40% had no side effects.  Shout out of course to Dr Zsofia Stadler, my oncologist, working on another study of patients treated with immunotherapy, and if further cancers can be prevented.  The future may be the Lynch Syndrome vaccine, but does the...

I sit down with Dr Aparajita Singh, Gastroenterologist and Director of the Lynch Syndrome Center at UCSF, where it truly is a team effort taking care of Lynch Syndrome patients.  Aside from me mispronouncing Lynch Syndrome, it was a wonderful engaging conversation.  UCSF Lynch Syndrome Center should have the links to everything discussed, which was a lot.  Check it out.        

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 potentially connect lynch syndrome providers without breaking any pr...

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 includes additional investigators and patients for a much bigger trial, at a ti...

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

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.  

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 discussion in Spanish, where participants from across the gl...

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 be a...

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...

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.  

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 significantly over time.  For fun, we t...