AliveAndKickn's podcast: Recent Episodes
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.
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-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
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 part of the process in the journey. We also get into the subject of ethnicity and ancestral background and relevance for interpretation, even touching on newborn screening and communicating with non-human species.
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 western lifestyle spreads. African countries, especially sub-Saharan African countries will not have the tools or infrastructure to work with this increase. Developing a network of experts using digital pathology could mitigate some of these issues.
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 future also include immunotherapy before cancer for lynch syndrome patients? How about trying to turn non-lynch tumors into lynch (like) tumors so they can be treated with immunotherapy? Dr Diaz hopes other researchers can be bold moving forward, and that someday, this is all routine and these stories are no longer news.
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 privacy issues. Biggest barrier is going through the training and understanding how it works in order to do anything meaningful. As patients, we need to remind our physician offices to be specific in documenting our visits.
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 time to be determined, and of course funding is always a priority. Suffice it so say, interest is high is seeing this come to late stage development.
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 and proactive. Gastroenterology has incorporated AI tools, so far in polyp detection, but also summarizing patient history and creating a whole picture, which is also helpful in oncology and more. Note that this was originally recorded just after the New Year in early January.
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 globe attended.
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 good solution.
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 disucussing such a difficult subject.
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 talked Artificial Intelligence and risk prediction, and soccer in the New York City area.
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.
I sit down with Dr. Patrick Soon-Shiong, Executive Chairman and Global Chief Medical and Scientific Officer for Immunity Bio, and we talk everything cancer vaccines scientifically, including the potential Lynch Syndrome vaccine. A new term is announced on our podcast, Tumor Educated Lymphocytes. Dr Soon-Shiong, succinctly summarized a very complicated vaccine space, which will be important as more patients enroll in trials and learn about their genetics.
I sit down with a reluctant guest, Diane Hardesty finally, Lynch Syndrome patient, speaker and a self-proclaimed Valley Girl. Before Diane's genetic testing results, 10 people in her family had passed away from cancer. Diane's son did not inherit her mutation so it ends with her. Diane is still a previvor, as she has not had cancer, but not for a lack of looking. Diane's sister has had cancer 18 times and she is still with us. How can she NOT do this? - is Diane's mantra when asked how she can talk about Lynch Syndrome when so many have been affected.
I sit down with Robin Centner, Lynch Syndrome survivor, who talks about how she had a conversation with Dr Henry Lynch himself, her family history, and how she made it her mission to take of her family and make sure they had all the information they needed to take care of their health. Robin feels fortunate to be able to do what she does in her home state of Kentucky and beyond.
I sit down with Dr. Christina Dieli-Conwright to discuss exercise and nutrition, esecially as it pertiains to lynch syndrome patients, but all cancer patients and everyone else. Dr Dieli- Conwright works with cancer survivors exclusively now, and is excited to be working with some of the most vulnerable populations including lynch syndrome patients. Moving as a message is a tough one especially in the States, but it's a necessary one, especially in the cancer journey. Christina's clinic at Dana Farber is for Dana Farber patients being treated there, but measurements can be done virtually and remotely. Everyone has their own motivation for potentially exercising, but sometimes a cancer diagnosis will stimulate a change in behavior. All exercise is good for lynch syndrome patients, but most importantly, pick the one you're going to do and stick with. We discuss verbage and terminology in research, trials, and healthcare in general. Sit less and move more. Some exercise is better than none.
I sit down with Gastroenterologist Dr Darrell Gray II, as we discuss the Association of Black Gastroenterologists and Hepatologists (Black in Gastro) movement, and how he approaches communicating bedside practice to policy. He wants to advance the science and center the community involvement, and there is always will be more work to be done. As new technology is implemented, those that have been marginalized in the past, tend to be the last to have access and/or participate. I asked a question that had been on my mind, which was the notion of ethnicity in clinical trials. ABGH is a 501c3 that continues to grow since inception in 2021. Black women in medicine are statistically leading black men in medicine, but they face their own challenges (as do all women working in medicine).
I sit down with Roxy Thunder, originally from the Phillipines but now residing in Michigan. Roxy is a bodybuilder, personal trainer and a lifestyle coach. Roxy inherited her Lynch Syndrome mutation from her father, who passed away from colon cancer and was diagnosed at 45. Roxy herself developed bleeding, where she discovered PCOS and Endometriosis, all while going through a divorce as well. She also had genetic testing to confirm Lynch Syndrome, and subsequently developed the lifestyle she lives now. Even with family passing away in the Phillipines, so far, none of the family has gotten genetic testing. Roxy credits changing her lifestyle and training for keeping her healthy. In her spare time, Roxy became passionate about politics during Covid and researching, including going down some rabbit holes, as we all have.
I sit down with LeeAnne Hayden, Lynch Syndrome patient, ostomy patient, and host of The Beautiful Bag podcast. Not only does she have an inspirational story, but she is also the first and only (so far) lynch syndrome podcaster that I've had on. LeeAnne has adjusted to her new lifestyle and is upfront that it's an adjustment that takes time, but like anything, she hits it head-on. LeeAnne is sharing her ostomy experience so others can benefit.
I sit down with Alison Rosen, colon cancer survivor and lead on Project Echo for the American Cancer Society. We talk about young adult survivorship, cancer advocacy and of course Lynch Syndrome. While Alison was 32 at diagnosis, she (so far) has tested negative for anything genetic, which was surprising given the family history of cancer. Apparently we were on a podcast together in 2012 or so (someone look it up) so Alison looked me when it was time to potentially get an ostomy. Project ECHO (Extension for Community Health Outcomes) bringing subject matter experts with participants from many walks. All teach all learn is the motto. Successes and failures, tools, and more. Allison is co-chairing the Art and Science of Hope panel at ASCO.
Full disclosure, we recorded this in February, just as the Alabama Supreme Court IVF decision was handed down. I sit down with Scott Weissman, Genetic Counselor and so much more, at the Norton & Elaine Sarnoff Center for Jewish Genetics. Statistically we're all carriers for something in the carrier screening space, but also statistically it's very low for both partners to be carriers for the same mutation. Interestingly, Illinois has specific issues geographically as it borders a number of states that have strict reproductive rights issues, including abortion and family planning. We did discuss hereditary cancer, including CMMRD, constitutional mismatch repair deficiency. We also discussed the potential Lynch Syndrome vaccines and how the current backlash against science and vaccinations could be detriments to moving forward. We did get into socioeconomic issues, not just political and philosophical, but I think we're on a similar page. Whatever hair we had left is gone.
I 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.
I sit down with Emily Goldberg, Genetic Counselor for JScreen. JScreen is a nonprofit that provides cancer genetics testing, but also has a reproductive carrier screening panel. Most patients choose saliva but sometimes blood is chosen by mobile phlebotomy. JScreen which started in Atlanta, provides testing and counseling in all 50 states. Pricing is unique because they are a non-profit. Cancer genetics was launched 3 years ago at JScreen and the numbers have increased dramatically with people wanting to have genetic testing. There's still wait times for cancer genetic appointments, so there's a need for services like JScreen. Variants of Uncertain Significance still happen regularly, about 20% of the time. Historically they get classified over time as benign. Cascade testing, or getting other family members tested after one tests positive, continues to be an issue in the space.
Boise Podcast pro Cody Mitchell joined me on the podcast as we talked Lynch Syndrome as she approaches her 4th cancerversary of endometrial cancer. Cody has been able to turn her diagnosis into knowledge and cohesion among her network. Cody is considered de novo as she is the first in the family to have a lynch mutation. Cody's genetic counselor recommended AliveAndKickn and she appreciated that we are living with Lynch, and the information is coming from reliable sources, especially in a world of misinformation. Cody and I are also on Peloton together, so she shared her story of getting her Peloton during treatment, which of course during Covid. She gives credit to her oncology physical therapist who recommended an exercise regimen, and cites the benefit of exercise and consistency to maintaining her identity. Her numbers actually improved during treatment. I won't give away Cody's favorite Peloton instructors, so you have to listen for yourself. I tell the story of my one and only time doing Peloton meditation in the studio.
I sit down with the Awkward Angler herself, Erica Nelson, from west of Denver in Crested Butte, Colorado. Erica is a flyfishing guide in the Valley with a Lynch Syndrome story and so much more. Erica also does consulting on diversity, equity and inclusion with her own podcast. The organization Brown Folks Fishing has a number of programs around conservation, but also looking at leadership roles. Angling for All addresses inequality in fishing, talks about reconciling and navigating our own identities and creating action. True diversity work is in the recovery. Erica is the second indigenous flyfishing guide in Colorado. I learned about Hozho, the term for balance and beauty in everything. The loss of her mom unexpectedly coincided with pain that caused her to get checked and she had cancer. She had a hysterectomy, and learned she inherited MLH1 from her father. Erica is balancing the grief of losing her mother and the changes in her body. Erica disclosed that she postponed her urgent surgery to go on a trip to Brazil that she had been planning for some time. Obviously she's ok, so...good decision/bad decision.
I sit down with Dianne Hammer, who shares her Lynch Syndrome story for the first time on a podcast. Recently diagnosed, Diane is still a previvor, although she found pre-cancer when she had her hysterectomy. She's also unsure which side of her family she inherited her mutation. An avid writer and reader, Diane was also sexually assaulted while working at a bookstore at knifepoint. Although able to fight him off, the person had assaulted others, and eventually caught and put away. Diane became a changed person after the experience, similar but not the same as cancer, a car accident, etc. As a researcher, Diane found no resources for middle aged sexual assault, so she built her own platform. Sexual assault is not about age, sex, desirability. It's about power and control. I was caught off guard about the dramatic number of sexual assaults that occur, taking into account the ones that aren't even reported. I'm guessing there are people out there who could benefit from Diane's experience and the community she is creating.
I sit down with Rachel Travis, otherwise known as the TattedRayofSunshine. Not only does Rachel have a Lynch Syndrome colorectal and peritoneal cancer story, but also an alcohol, a firearms, a weight, a childhood trauma, rape and more. Rachel hopes that her diagnosis was a wakeup call for others, including her family. Through her faith, she feels she can smile and laugh and get through this, and just about anything else. We're both hopeful for the future.
I sit down with Michelle Vina-Baltas, who has been having colonoscopies for 20 years, developed skin cancer 12 years ago, but only got tested for Lynch Syndrome recently. Even as a life coach with tools for mitigating it, Michelle still gets a little anxious before screenings. Michelle works with women that struggle with food and body image. Finding balance and a positive relationship with food is difficult for so many of us, including those who have had cancer issues. It all ties into how we respond goingt to the doctors for screening.
I sit down with Amber Eastman, Lynch Syndrome survivor, and member of the Confederated Tribes of Ronde in Oregon. Amber confirmed with me that women of color face a more difficult challenge in that they are often noit believed, that they're crying wolf when they come to the physician's office. Thankfully, Amber met with a physician who had just attended a lynch syndrome seminar, and she was correctly diagnosed. I love Amber's policy of never a victim, always victorious. Not only did Amber have colon cancer and liver cancer, but also ovarian cancer. Finding AliveAndkickn and being part of Living with Lynch gave Amber the impetus to become a Lynch Syndrome advocate in her community.
I sit down with Srinivas Pai, Lynch Syndrome survivor from lots of different places including India, Singapore, Michigan, New York and now Indiana. While of course he has a rectal cancer story, how he and his wife, an Internist herself, managed his treatment in 2012, tells a story itself. We talk about the rectal cancer trial that recently took place roughly 10 years after his own treatment at Memorial Sloan Kettering in New York City. The best thing you can do is share with your family, and what they do with it...is what they do with it. Srinivas is building what he's termed Power (withpower.com), the AirBNB of clinical trials, not just for Lynch Syndrome.
I sit down with Jaystan Davis, colon cancer survivor at age 19, as we discuss Lynch Syndrome, basketball, and more. We also talk about how what was originally thought was an infection was actually additional cancers, so being your own advocate is important. His clinical trial of immunotherapy and folfox proved to be effective in treating Jaystan. He did the treatment for 2 years from home, while still being a student. August 2023 was his last treatment and is cancer free. So now what happens? There's no playbook, especially for someone in this space at this age. We talk about coaching with his father, and I share my one season of coaching basketball experience.
I sit down with Dr Toni Seppala from Finland, GI surgeon, as we talk Lynch Syndrome and hockey instead of soccer for a change. We talk risk-reducing surgeries, screening intervals, and the debate that continues, especially as it pertains to the different genes within Lynch Syndome. We also discuss the cancer registry system in Finland which has been around since the 50s and the lynch syndrome registry which has also been around for over 40 years. Close to 400 families are in the registry now.
I sit down with Erin House, Lynch Syndrome survivor with a great story, including her running in the NYC marathon on behalf of AliveAndKickn. Erin, originally from Australia, has an interesting story of genetics and international implications. Takeaway is to be your own best advocate and follow your instincts. The Erin House gene is now considered pathogenic in the States as well as in Australia. Erin is setting up a betting pool for her finishing time, so place your bets now on Erin's fundraising page on AliveAndKickn. I will make sure not to bring Fosters beer for her finish. We both agree that pumpkin does not belong in beer or coffee, but pumpkin is great otherwise.
I sit down with Rachelle Manookian, Genetic Counselor at Children's Hospital of LA. We discuss the transition from adult oncology at City of Hope to pediatrics, and the nuances it entails. Rachelle and I originally met when she was a student at Mount Sinai in New York, and she's running the NYC marathon for AliveAndKickn, giving her an excuse to get back to the City. Link to Rachelle's marathon fundraising page is at www.AliveAndKickn.org. We caught up on the good old days at Mount Sinai, as well as some NYC food digression. Hopefully I had my Los Angeles soccer history close to being correct. Fact check me.
I talk with Dr Jose Perea Garcia, Digestive Surgeon as well as cancer researcher in Madrid. We talk about how surgery has evolved and management of the Lynch Syndrome patient compared to sporadic cases. We compare some protocols and coverage in the US vs elsewhere such as Spain where there is government run. Urban vs rural is an issue everywhere. I convince Dr Garcia to offer me a ticket to an Atletico Madrid game if I get there, including if they play Real Madrid.
I sit down with Dr Tiago Biachi, Medical Oncologist at Moffitt Cancer Center, as we discuss Lynch Syndrome, GI cancers, MSI, immunotherapy and of course soccer including the women's world cup, the pickup game at ASCO which I was not invited to, and more.
I sit down with Dr William Karnes, Gastroenterologist and Director of High Risk and Colonoscopy Quality at the Digestive Health Institute at UC Irvine Health, as we discuss his accomplishments, including the launch of DocBot. We discuss quality measure indicators and what can and/or should be built into the automation. DocBot, now as part of Satisfai health is about to launch a multi-center study in four different countries.
I talk community oncology with Dr Harsha Vyas, Oncologist at Cancer Center of Middle Georgia. Dr Vyas is also Advocacy Chair for the Community Oncology Alliance (COA). Belk, Kroger, and WalMart are the centers of the area, so people will come to Dr Vyas and make a day of it while there. Truly appreciate Dr Vyas' perspective on what he sees, as well as his own "why" for becoming an oncologist. It's important to have the family involved if possible to ensure a higher success rate, which is the art of oncology and medicine overall. COA's goal is to educate on what is happening in the community oncology space, to patients, lawmakers and more.
I had a conversation with Brian Kelly, life sciences and diagnostics professional. Brian's career is expansive but working with pharma on advanced diagnostics has been his passion for the last dozen years. Precision therapy is not a simple triangle. A lot of parties are involved. Molecular classification of disease has evolved. MSI, BRAF, KRAS has crossed the silicon valley chasm from early adoptors to main street. The FDA and the other global approval bodies deserve a lot of credit for upping their game in the approval process, especially over the last decade. There's still a lot to be done to educate and inform, and Brian is someone who has seen it firsthand with his wife who had early colorectal cancer, who does not have Lynch but is MSI High, and thankfully is doing well. The ecosystem still matters, and we need to continue to strive for better.
I talk with Melissa Carr where we talk Lynch Syndrome, meteorology, and how she has dedicated herself to a number of public health initiatives in Wisconsin. We also talk soccer and the Forward Madison (fla)mingos, her team Wildflowers team participation in the Badger Challenge bike ride/run/walk. Melissa is also co-founder of Soles United, a collective of orgs that bring inclusivity to the forefront. Melissa is also Wisconsin chapter lead for Mom's Demand Action trying to protect people from gunfire. There's a lot of gun violence in the headlines, and even more that's not in the headlines.
I sit down with Angela, psychotherapist in the UK and we talk Lynch Syndrome. Angela went through her cancer journey during Covid, which has its own challenges. We talk about coping with the mental and emotional strain and putting things into place after a medical trauma. We talk toxic positivity and embracing that it's difficult and you're allowed to be human in this space. You'll have to listen to know where shutterdoodles came from.
I talk with Dr Marilena Mela and discuss her scientific evolution to where she is now. Thankfully Dr Mela was exposed to Lynch Syndrome so much that she has focused on molecular genetics. Dr Mela is PhD trained and is taking her board exams in August. We also talk about her role at the New York Genome Center, and her role as a Junior Board Member at the Cancer Genomics Consortium. We talk MSI and TMB, tumor normal sequencing and RNA.
I talk with Shweta Walia, Lynch Syndrome patient from northern India. Shweta has a significant history of cancer in her family, but she is the first to look into genetic testing and do something about it, both for herself and her daughter. I truly admire Shweta for her persistence and her willingness to stand up for her family and herself.
I talk the colonoscopy business with Dave Helm for colon cancer awareness month. We talk about technology upgrades, ASCs, hospitals and more. I shared the story of how my brother and I scheduled our colonoscopies on the same day without telling each other. We also discussed how sharing stories can make a difference in ways and with people that would surprise you. We also discussed Dave and Courtney's SpinTowel business called Drip Accessory, how it got started, and its success, which reminds me that I need another set to supplement my current inventory. After recording this live, I did the American College of Gastroenterology ride with Alex Toussant.
I sit down with Dr Dana Chase to discuss the role of the Gynecologic Oncologist. Gyn Oncs as they're called frequently, is a labor of love as there's tremendous amount of time and effort put into initially attaining this unique role in the care of women, including those with Lynch Syndrome. We talk ovarian cancer, endometrial cancer, fallopian tubes and more.
Timely conversation with Robert Rikard, Lynch Syndrome survivor and attorney from South Carolina. We talk about survivorship and being positive yet informative. Robert has some real good friends in the right places, as he's still with us after having kidney cancer, as well as colon cancer. Robert and his wife instituted the no "BS" rule in their lives, focusing on the positive, entering mindfulness with meditation. Find some positivity and move forward every day. We also talk social media including life on Twitter and Fox (National Enquirer for TV), as politically incorrect liberals. Robert also talks about the Murdagh trial, as he was intimately familiar with the parties involved. We didn't spend much time on Scott Galloway, but we're both fans of his perspective especially as fathers of adult age sons trying to make their way in the world.
I sit down with Hope as she shares her Lynch Syndrome story of developing colon cancer in her mid-30s. It goes to show that you should listen to your parents when they're sharing articles with you. It also shows that a good persistent clinician can be a lifesaver. Hope feels so strongly after her experiences that she is giving back to other women who could benefit from her knowledge. Hope considered herself as a fighter when she was in the thick of treatment, but as a thriver now. Also a reminder that the caregiver doesn't come out unscathed. Take a listen.
I sit down with Carrie Vee, speaker and author and of course Lynch Syndrome patient. Carrie's history with cancer and her family's history is extensive. She tells her story and is using her voice to make a difference in this hereditary syndrome that is so prevalent but still unknown. Choices have consequences and her desire is to help people choose wisely. Thankfully ice cream fits in the choose wisely category.
Michaela Marchi shares her Lynch Syndrome story. I truly appreciate her ethnic background, how she approaches life. Michaela uses her art and her song to bring people to a place of cosmic and spiritual beauty. Through all of the cancer and death, she can find peace in her world. Michaela so far is the only guest to quote Dante. Michaela gives her account of how advocacy literally saved her life, helping her to find a clinical trial that cured her. Her spirit animal, the turtle continues to watch over her. Rural places and on reservations, there continues to be disparity in care.
I sit down with Malvina Kefalas, who I first met at the Get Your Rear in Gear New York 5k, and whose mother passed away of colon cancer. Actually I was lying down as I had a bad cold and I sounded. like I was growling. Malvina opens up about how she turned her grief into a mission to make a difference in this space. Malvina talks about how she inherited a CHEK2 mutation as well as a APC VUS from her mother, and is now routinely screened and can be proactive in her care. Malvina has recently changed marketing roles and now works for CancerIQ a digital risk assessment for providers. It's true that some of the best interviews take place after coming out of anesthesia.
Talking everything Lynch Syndrome with Dr Jeffrey Weitzel, board certified Medical Oncologist and Clinical Geneticist who has been a pioneer in the field of hereditary cancer. Dr Weitzel is Vice President Medical Affairs Hereditary Cancer at Natera. Truly engaging conversation with one of the names you think of when you think about hereditary cancer.
As the summer was ending,I sat down with Isaac Ro, Life Sciences Executive, who I originally met at the Blue Genes Bash several years ago. Isaac left Goldman Sachs for Thrive Early Detection, where Bert Vogelstein and the group were working on liquid biopsy. After Thrive was acquired by Exact Sciences, Isaac left and became CFO at Sema4, which was a company where I worked as well. After taking Sema4 public, Haystack oncology is his newest venture which works on MRD in cancer. We talk data, the financial climate in genetics, and what it's like to pivot to a management role where you're relying on everyone in the team for company success.
As the summer was ending,I sat down with Isaac Ro, Life Sciences Executive, who I originally met at the Blue Genes Bash several years ago. Isaac left Goldman Sachs for Thrive Early Detection, where Bert Vogelstein and the group were working on liquid biopsy. After Thrive was acquired by Exact Sciences, Isaac left and became CFO at Sema4, which was a company where I worked as well. After taking Sema4 public, Haystack oncology is his newest venture which works on MRD in cancer. We talk data, the financial climate in genetics, and what it's like to pivot to a management role where you're relying on everyone in the team for company success.
I sit down with Travis Mayberry, President of Mayberry Memorial. Travis is a MSH2 lynch syndrome previvor. Before his father passed away in 2011, he was an avid BBQ cookoff competitor and for years after, the nonprofit foundation did BBQs as fundraisers. Very similar story to AliveAndKickn, Mayberry has evolved to be a specifically lynch syndrome focused foundation. Mayberry's Project Conquer enables high risk candidates to get scholarships for genetic counseling and genetic testing.
I sit down with Travis Mayberry, President of Mayberry Memorial. Travis is a MSH2 lynch syndrome previvor. Before his father passed away in 2011, he was an avid BBQ cookoff competitor and for years after, the nonprofit foundation did BBQs as fundraisers. Very similar story to AliveAndKickn, Mayberry has evolved to be a specifically lynch syndrome focused foundation. Mayberry's Project Conquer enables high risk candidates to get scholarships for genetic counseling and genetic testing.
I sit down with Dr Annelie Vogt von Heselholt as we talk about green bananas, cancer prevention, diet, Huntsville Alabama, Lynch Syndrome and how the two of us are entwined in all of this.
I sit down with Dr Annelie Vogt von Heselholt as we talk about green bananas, cancer prevention, diet, Huntsville Alabama, Lynch Syndrome and how the two of us are entwined in all of this.
I talk with Robin about life with Lynch Syndrome, why we started AliveAndKickn, how it is run and by whom, and what life is like to be caregiver to someone with Lynch as well as to kids as previvors. Robin has the ability to compartmentalize the programming of running the foundation versus the understanding that living with Lynch Syndrome has a number of emotional and physical challenges.
I talk with Robin about life with Lynch Syndrome, why we started AliveAndKickn, how it is run and by whom, and what life is like to be caregiver to someone with Lynch as well as to kids as previvors. Robin has the ability to compartmentalize the programming of running the foundation versus the understanding that living with Lynch Syndrome has a number of emotional and physical challenges.
I sit down with Eve Breu as we discuss her lynch syndrome story. Since the podcast was renewed for another season, Eve was willing to come on and talk about her VUS. Eve is a story of persistence in the face of uncertainty, showing that being your own advocate is the best advice. Eve has also participated in the Connect My Variant program. According to Eve, there are a number of folks with the same variant in the same gene but it's still not classified as pathogenic. We also discuss soundbreaking dolphins but that's another story.
I talk with Kimmy Niemi, Boston based actor and voiceover actor and lynch syndrome cancer survivor. Unlike me, Kimmy didn't do her own narration under anesthesia during her colonoscopy. Since upper endoscopy, I've given up the narration for full anesthesia. Kimmy talks about breaking into show tunes during her MOHS surgery with her physician during her skin carcinoma removal. Kimmy went from musical theatre to music and songwriting, and learning guitar, to acting in TV and movies and narration. We're both still waiting for the call to go to Newark and audition for Audible. Hope we get the part!
I sit down with Joan Rush, Founder of the Jacqueline Rush Foundation. Joan shares the story of how her daughter was misdiagnosed and finally diagnosed at an extremely young age. Joan and her husband Alan are determined to inform the public & medical community about Lynch Syndrome & help people realize the power of knowing what’s in their genes. We talk about immunotherapy, clinical trials, and the potential vaccine. We also talk about what it's like to be involved in the non-profit world, which is not easy, especially when it's so close to your heart.
In honor of Tottenham's strong finish in the top 4 of the Premier League, Mo Haque is back. For the first time, I have a returning guest to the podcast, having been on previously in 2020. Mo and I celebrate getting older, as he had a much tougher road than me. Thankfully, immunotherapy with Keytruda has allowed Mo to survive and thrive. Mo was in the inaugural Living with Lynch patient workshop, has written a book Choosing to Stay, has done public speaking including stand-up comedy and truly is AliveAndKickn! While recorded earlier in 2022, Mo's soccer/Tottenham's perspective should still be current. Mo still has not named his stoma.
I sit down with Jason Wright, and talk about Lynch Syndrome and gynecological cancers. Columbia's clinical program is a comprehensive center for hereditary abnormalities, including BRCA, Lynch and others. Obviously the goal is to identify those with a variant before they have cancer. There's still a greater awareness of BRCA, even before the Angelina effect. We talk about screening fatigue that can set in over time when you haven't had cancer for a considerable period of time, but you need to remain diligent. We are convinced that healthcare is the only sector still using fax machines. Cascade testing is still the best way of impacting hereditary cancer syndromes like Lynch. Columbia is working on mathematically modeling based around the specific gene mutation to strategize screening practices and mitigation options.
I sit down, or at least try to sit down with Michele Elliott, the wandering Lynchie. Michele tells her Lynch Syndrome story, but she also tells the story of how she sold her house, and packed up her little dog and decided to live in a camper and spread the word about Lynch Syndrome. Michele also does RV inspections while on the road. Now Michele dons her AliveAndKickn shirt and talks to anyone who wants to know more or what it means.
I sit down with Dr Sid Yadav, Gynecological Oncologist in Women’s Cancer Program who does research in DNA damage repair deficiencies & familial cancers. Dr Yadav talks about a protocol for anyone who has surgery for colon and/or endometrial cancer to have tumor sequencing as well as germline testing. We talk about basket clinical trials that may have taken place before people were being tested for lynch syndrome and how the field of oncology is evolving. I of course want to know once a person has cancer the first time, where is the next one going to take pace - same location or elsewhere in the body? Truly appreciate how a community oncology setting can have a similar model as a major academic setting when it comes to having resources to handle 1000 or more patients with a hereditary cancer syndrome. It's a cost-effective solution. We discussed the differences in utilization internationally and the work that can and should be done.
I sit down with Dr Sid Yadav, Breast & GYN Oncologist in Women’s Cancer Program who does research in DNA damage repair deficiencies & familial cancers. Dr Yadav talks about a protocol for anyone who has surgery for colon and/or endometrial cancer to have tumor sequencing as well as germline testing. We talk about basket clinical trials that may have taken place before people were being tested for lynch syndrome and how the field of oncology is evolving. I of course want to know once a person has cancer the first time, where is the next one going to take pace - same location or elsewhere in the body? Truly appreciate how a community oncology setting can have a similar model as a major academic setting when it comes to having resources to handle 1000 or more patients with a hereditary cancer syndrome. It's a cost-effective solution. We discussed the differences in utilization internationally and the work that can and should be done.
I sit down with Angela Ross, Genetic Counselor who sees a number of Lynch Syndrome patients at Memorial Sloan Kettering. MSK has created a program called MSK Catch, a clinical care program for people with hereditary cancer syndromes. They are collaborating with Hackensack Meridian and others that are MSK approved for those outside of Manhattan, namely north Jersey. Angie also discusses the Impact protocol of assessing the tumor genetically, as well as the germline. Angie says I'm not screwed up, just special, which I assume is a good thing.
I sit down with Kory Jasperson, Genetic Counselor who has focused on Lynch Syndrome and colon cancer for about 15 years. Kory is seeing the new model of the remote genetic counseling and how it is playing out, well before Covid. Are we getting closer to screening more of the general population? Almost. New and efficient strategies moving forward will be needed to effectively identify, educate, and empower patients. We're building the train as it's chugging along the tracks.
I sit down with Leon Squadrito, husband to Melissa Squadrito, who passed away recently. Melissa, who had Lynch Syndrome, was previously on the podcast in November 2020, then as a previvor, but developed soft tissue sarcoma, a rare cancer. Leon talks about their lives together, including the tough part of watching her go through so much, but also the effect that Melissa had on her patients as a Nurse Practitioner and as a donor.
I sit down with my cousin from another mother Pat Fahey, founder of Lynch Syndrome Ireland. Pat talks about his long lost sister in the States and her history with cancer and how she found him. Pat talks about why he started LS Ireland and his associate Roberta Horgan. So while Pat will claim he's not as eloquent as Sir John or Ian Frayling, he certainly has a way of explaining Lynch Syndrome in such as fashion that anyone can understand. Apparently my ice cream habit is well known across the pond as well.
I sit down with Sam Alexandra Rose, Lynch Syndrome survivor and self-publilshed author of Gut Feelings, Coping with Cancer and Living with Lynch Syndrome. Sam has CMMRD, as both of Sam's parents have Lynch Syndrome and she has inherited it from both. Sam's brother was 16 when he passed away from a brain tumor, but also a sister who did not inherit a mutation from either parent. Sam is doing her PhD around cancer as well.
I sit down with Amanda Boitnott, as we discuss her family's extensive history with Lynch Syndrome and cancer, but also previvorship for extended periods for several members of her familly. Our families have taken similar approaches to discussing and sharing and setting the example. We also talk Yellowstone, ranching, and life with massive lapdogs Hobbes and Zeus. Amanda and her daughter both have AliveAndKickn tattoos, which is awesomely cool, but also a great conversation starter.
I sit down with Margaret Hitchcock, virologist, Lynch Syndrome patient, and Vice President of the California Colorectal Cancer Coalition. Melanoma and Triple Negative Breast Cancer survivor and we discuss celebrating cancerversaries and what it's like to be a survivor, knowing there's a distinct possibility, if not likelihood, there will be at least once reoccurrence. Margaret talks about her extensive family history of cancer, and not your typical ones. Since 2006, Margaret's C4 group distributes community grants for screening for colorectal cancer. Margaret talks about how her dog seemed to diagnose her cancer, was involved with her respiratory management post surgery. We also talk Covid and vaccines, as it was originally recorded at the end of 2021. The public health message has been a problem, and the mistrust is unfortunate. We also talk about the cost/benefit relationship in healthcare and our approaches to managing a chronic situation.
I sit down with Kelly Ann Giggler, Lynch Syndrome previvor and photographer for ESPN. We discuss rubber ducks, peaches, Peloton, and her family's extensive medical history, including negative testing for BRCA. We also talk about our mutual admiration for Dr Xavier Llor at Yale. Kelly Anne received 4 out of 5 stars on Yelp for how clean her first colonoscopy. We also talk about the celebritizing of Lynch Syndrome in order to get the word out more.
I sat down with Jim Baral just before the New Year, and we discussed his experience with colon cancer as a lynch syndrome patient, as well as the upcoming colonoscopy ESPY (colonEscapy) awards ceremony as we both walk the blue carpet for 25 plus times. Proof that we're all originally from Brooklyn. We have very similar stories and attitude about this. Jim's LA cleansing is the stuff of legend. We talk about branding and what will move the needle from a marketing standpoint, but we also talk about prioritizing especially as we've gotten older and what it's like to be living with lynch.
I sit down with Laura McCullough and we talk about Lynch Syndrome, how both our dads with Lynch outlived their spouses, sons, and baking. We also talk about the movie Look Up, and the hope that there will be something good from the data from the Covid pandemic. Hope her son comes on the podcast next.
I sit down with Laura McCollough, Lynch Syndrome survivor. We talk about our dads with Lynch yet outliving their spouses, kids, family history, and the perils of driving on the NJ Turnpike. Laura's family has had some unusual cancers, even for Lynch. We talk about the current state, but hopeful outcomes from the Covid pandemic. Joy and interconnectedness and sourdough bread are her current projects. Hope her son Luke comes on the podcast. I have officially changed my name to Carmela Tentula
I speak with Janice Berliner, Genetic Counselor, Author, and Genetic Counseling Program Director at Bay Path University. We talk about Genetic Counseling training, telemedicine, and the logistics of getting to Longmeadow, Massachusetts. In Good Conscience, her fictional book, talks about a celebrity with Lynch Syndrome. I may have commented in the back of book. Little known fact is that Janice discovered genetics and is on Mount Rushmore.
I chat with Erica and Nick Vargo Fiedler as they discussed Erica's family history with Lynch Syndrome as well how she is turning her witnessing medical dedication into potentially pursue a career in medicine. One Colon at a Time will be the name of the practice, have its own match making web site, and Nick will wear it on his headband. We also discuss the evolution of their relationship with running distances and in running clubs. Thankfully their dog Maddox didn't react to Hobbes' barking. Oh and Nick is cheap.
I sit down with Dr Robert Huneberg, who not only does research as a Gastroenterologist at the National Center for Hereditary Tumor Syndromes in Germany, but also has a lynch syndrome in his family story. We discuss ChromoEndoscopy and adenoma detection rates. We also discuss lynch syndrome specific research (upper GI) taking place from a number of groups in the States as well as internationally. We of course talk football and futbol.
I sit down with JJ Singleton, Lynch Syndrome survivor, and he talks about his chemotherapy and immunotherapy history, microsatellite instability and more. JJ is still AliveAndKickn 5 years after his diagnosis. We also discuss our common affinity for Moon Pies from Chattanooga.
Dave sits down with Bryson Katona, Gastroenterologist at the University of Pennsylvania. We talk about med school and the teaching of genetics and Lynch Syndrome "back in the day." Regardless of how many times it's discussed, people are still amazed at the prevalence. A silver lining of Covid has been the increase of genetic testing and telemedicine. We re-hash the usual debate of screening guidelines for someone with Lynch Syndrome when it comes to testing and frequency. Bryson talks about papers coming out on supporting the benefit of upper endoscopy in Lynch Syndrome. Looking forward to discussion on pancreatic cancer and Lynch Syndrome at CGAIGC.
Dave sits down with Kerry Evers, lynch syndrome previvor and co-President and CEO of Pro-Change Behavior Systems. Dave had met Kerry at Dana Farber's Lynch Syndrome awareness day, LynkedIn. We talk Ben and Jerry's mint chip ice cream, Genetic Information Non Disclosure Act (GINA) and traveling for colonoscopy and care. If anyone was prepared for having lynch syndrome and helping people, it's Kerry. Helping individuals with changing behaviors for the better is her life. Developing skills for when times get tough. We also talk about the ratio of men vs women when it comes to taking care of themselves. Resilient.
Dave sits down with Chris Tarver, Lynch Syndrome survivor, and they talk about how he found out he had colon cancer and subsequently lynch from his first colonoscopy. Chris talks about his decisionmaking, what went into it, and how he wants to share his journey so others can benefit from it. We talk about having conversations with our doctors, and how it truly benefits the relationship for the long run.
Dave sits down with Brian Shawn, sportscaster, lynch syndrome cancer survivor, and fan of all things sports. Interestingly enough, it was Sanford Health reminding Brian to get tested that got him to finally go ahead with it. Now as a colon cancer survivor, he's using his microphone to spread awareness for lynch syndrome. We also talk about Minnesota United soccer, and my trips to Minneapolis for meetings with our partners, the Colon Cancer Coaltion, and Get Your Rear in Gear. Of course, we discuss Trey Mancini and whether or not he has lynch syndrome, given his age of colon cancer onset and his family history.
I talk lynch syndrome, prostate cancer, melanoma, Man Up to Cancer, and being a retired Canadian police officer. Don is that rare combination of being a guy who is willing and actually eager to discuss his cancer with other guys. I look forward to someday getting back there one day and fishing on the Campbell River and surfing in Tofino. Apologies for the technical difficulties including the dog barking. www.prostatecancer51.com is his story
I sit down with Maggie Muir, high school Spanish teacher and marathon runner who is looking to raise awareness for lynch syndrome as a number of her family members have been affected, including her father who had kidney cancer and melanoma. As a recently diagnosed previvor, I think you'll love her energy, but if you run with her, she may talk your ear off. Pets dogs and loves ice cream.
All Lynch Syndrome people can check out Connect My Variant. I sit down with Dr. Brian Shirts, Professor of Laboratory Medicine and Pathology from University of Washington. We discuss tumor sequencing, germline testing, cascade screening and the Connect My Variant Project. Connect My Variant is graciously funded by the Brotman Baty Institute for Precision Medicine. Interestingly enough, family members without the mutation tend to be some of the most active in recruiting family members with mutations to talk about it.
Sat down with Reija Kime who is womb cancer survivor with Lynch Syndrome who is Cycling for Cancer across Europe. Reija is giving back for her care at Royal Marsden before going back to her mother country Finland. I learned that Lynch Syndrome has colors. Who knew?
Dave sits down with Dr Don Dizon and discusses social media, clinical outcomes and survivorship, sexual health after cancer and of course lynch syndrome. We really talk about quality of life, and how it's not always tied to the clinician's office. I'm still not on TikTok, but I'm getting closer.
Sunday morning conversation with Maureen O'Brien, author and Lynch Syndrome cancer survivor. We talk about the stress of living with Lynch, life in general, and finding the focus that keeps you going. Favorite quote - The passion of the scientist and the precision of the poet. Maureen turned to the psalms to see her through. Life is a series of pivots and changes.
My conversation with Dr Eduardo Vilar Sanchez from the University of Texas MD Anderson Cancer Center about Living with Lynch Syndrome, immunotherapy and the Naproxen study. Of course we talk Real Madrid, MD Anderson, the Houston Dynamo, and fellow colleagues in CGAIGC and the return to conferences in person. Stick around for the shoutouts and name-dropping.
I talk with Amy Hart, the Barefoot Professional about her experience with Lynch Syndrome, her surgery during Covid and being a colon cancer survivor with an ostomy. We also discuss messaging and perception as a survivor, especially on social media.
My conversation with Rick Boland, lynch syndrome patient, author of Cancer Family professor, and physician. Rick talks about his. Lynch Syndrome research over the years including into Microsatellite Instability. My favorite part is how proud he is of the next generation Matt and Patrick and how they've become researchers and oncologists as well.
My conversation with Natya Porter, Lynch Syndrome previvor, talking about her family history with cancer both in Eastern Europe, the Soviet Union and in America. Initially, she was tested for BRCA and was relieved for many years thinking she was in the clear. As a fashion designer, I did manage to make Natya laugh imagining me wrapped in lycra and flannel. We both share the love of the wrap-dress.
My conversation with Sara Riordan, board certified genetic counselor and current President of the National Society of Genetic Counselors. We discuss HR 2144, the Access to Genetic Counselor Services Act, currently before Congress and getting involved. We also discuss tumor biomarker testing, lynch syndrome, MSI, and the role of the genetic counselor in tumor boards and educating physicians.
My conversation with Dr Noura Abul-Husn, internist and Medical Geneticist at the Icahn School of Medicine at Mount Sinai, talking about making genomic medicine a reality that is going to help patients across a wide range, including Lynch Syndrome. We also discuss diverse populations, biobanks, and the process of going from research to clinical application. Of course scaling family history information is still an issue when it comes to meeting criteria for testing.
My conversation with Dr George Charames of Mount Sinai in Toronto, discussing oncogenomics capturing molecular targets and biomarkers, and clinical trials. Of course we talk Lynch Syndrome and MSI as well, plus Sick Kids hospital and CMMRD. We manage to talk soccer and Thierry Henry somehow and I get Toronto and Montreal mixed up.
I sat down with Lisa Schlager of FORCE (Facing our Risk of Cancer Empowered) to discuss FORCE's mission, policy, and the comparison between Lynch Syndrome and BRCA. We talk GINA/health insurance versus Life Insurance, and how Angelina Jolie is stalking me.
My conversation with Dr Joseph Grzymski, Principal Investigator for the Healthy Nevada Project and Chief Scientific Officer at Reknown Health. We talk population health, CDC Tier 1 initiatives, screening and more. Studies are showing that 90% of the population don't know their inherited risk of these conditions. We also talk New Jersey and growing up losing a parent to cancer, and how that influences your life.
My conversation with Dena Goldberg, Genetic Counselor and entertainer, discussing Lynch Syndrome, her role at UCSF cancer center and Kintalk, and her tag line of genetics made easy. I have offered to be the narrator in the docuseries but apparently she wants my middle son to play the role as he's more attractive and has his entire digestive tract.
Conversation with Lauren DeMello, the Previvor Warrior. We discuss her losing her parents to cancer, her upcoming book, relationships, family, and what it's like to be Living with Lynch.
I talk with Dr Allyson Ocean about her role at Cornell Weill Cancer Center, pancreatic and colorectal cancer, precision oncology, clinical trials, patient advocacy, twitter, and of course lynch syndrome.
Conversation with Molly McMaster Morgoslepov, colon cancer survivor in her early twenties, co-founder of The Colon Club, ice hockey player and creator of The Colossal Colon. Molly's new book One Drop of a Rain is out, telling her story of inline skating across the country, carrying the Olympic torch, and meeting Katie Couric. Props to Anita Mitchell, colondar model and creator of Dress in Blue Day.
I sit down with Chris Evans and Stacy Zwerdling of the Colon Cancer Coalition, as we discuss colon cancer awareness month, the partnership with AliveAndKickn on Living with Lynch, Get Your Rear in Gear, Tour de Tush, Peloton and the stolen 40foot blow up colon.
Conversation wtih Dr Sofia Merajver and Bailey Hulswit regarding appropriately screening and evaluating people using technology for cancer, including the underserved both nationally and internationally. The idea is for patients, physicians, and genetic counselors to use the Inheret system to identify people not only before they get cancer, but also before they come into the clinic. We also discuss cancer survivorship, NCCN guidelines, and how breast cancer and Lynch Syndrome continue to be a topic of conversation and studies continue.
I talk with Parvathy Krishnan, who discovered her Epcam mutation, as well as her husband's, after her children were diagnosed with CMMRD, constitutional mismatch repair deficiency. We discuss Living with Lynch, and of course her son crashes the conversation when we discuss the Nets basketball team and Real Madrid soccer. #rarediseaseday #livingwithlynch #sportsaremorethanjustagame
Conversation with Dan "Dry Dock" Shockley, retired Navy officer, where we discuss Dr Henry Lynch, Attenuated FAP, #raredisease #veteran #ostomy #oldpontiac #denovomutation #pancreaticcancer
We talk Lynch Syndrome, New York Cosmos, New York Islanders, Brooklyn Nets, Tiger Woods, Black History Month, and becoming an AliveAndKickn Board Member.
Conversation with Mary Jane Glade, Nurse Practitioner in Lincoln, Nebraska, who started a high risk oncology clinic unique to the area. She's a big fan of hereditary cancer testing including Lynch Syndrome, and is of course on Peloton with me. We talk polygenic risk scores, personalized medicine, liquid biopsy, pedigree building and tumor sequencing. Both of us regret never meeting Henry Lynch, but are pleased to follow in his big legacy. Apologies for getting Rick and Steven Lipkin incorrect on the podcast, but the story is the same.
I talk with Anne Sabatos, business owner, and widower of a Lynch Syndrome patient, who shares her story of love during cancer.
My conversation with Shanda Foster, journalist and writer, discussing lynch syndrome and life as a young professional in Boston, immunotherapy and her time on Good Morning America. I hope it leads to me getting into a Dropkick Murphys video and/or tickets to Bruins Hockey. Of course we talk about Tom Brady's success, with the exception of the losses to the Giants.
Discussion with Dr Vamsi Velcheti, Director of Thoracic Oncology at NYU Langone Perlmutter Cancer Center, regarding cancer genetics, specifically KRAS, EGFR, lung and colon cancer and targeted therapies and clinical trials.
The traditional story of a kid from Baltimore meets Lynch Syndrome patient from Finland, and everything that happens after. Of course baby steals the show.
Lynch Syndrome patient story with cancer survivor Cheryl Abrao, actress and gardener, self-advocate, son with Hirschsprung Disease.
Lynch Syndrome discussion with Professor Heather Hampel, Licensed Genetic Counselor at The Ohio State University. We discuss universal tumor screening, liquid biopsy, next generation sequencing, germline testing, immunotherapy, microsatellite instability, colorectal cancer, endometrial cancer, multigene panels, pancreatic cancer, Immunohistochemistry, and our upcoming Living with Lynch event. Stay for the end for a plug for Dr Mark Lewis, and a cameo from Heather's husband.
Amanda Whitworth, wood artist and lynch syndrome cancer survivor, tells her family's story with squamous cell skin cancer, colon cancer, bladder cancer, endometrial cancer. Amanda deserves a break from all this and deserves happiness #_sawdustandsoul #thestorieswewishtotell #whenonedooropens
Sir John Burn talks about aspirin, Microsatellite instability, the CAPP3 study and of course Lynch Syndrome. He also discusses his history with Newcastle soccer and his brief stint as being part of Depeche Mode.
Dr Eleonora Teplinsky of Mount Sinai and Valley oncology discusses exercise and nutrition in cancer care, convincing me that my Peloton routine does not offset my Ben&Jerry's regimen. #mountsinai #valleyhealth #gynecologiconcology #breastcancer #lynchsyndrome #peloton #foodismedicine
Conversation with Dr Xavier Llor, Professor of Medicine Cancer Genetics Prevention Program and Cancer Screening Yale University School of Medicine where we discuss tumor sequencing, pathology interaction, precision medicine, EMR cooperation and of course lynch syndrome.
Conversation with Tina Cervasio and Christina Thompson, where we talk golf, sports, colon cancer, gynecological cancers, New Jersey and of course lynch syndrome.
Interview with my oldest son, Zach, previvor, who not only inherited my Lynch Syndrome mutation, my sarcastic voice, but also my love for genetics as a career. #family #Drexel, #Tulane #Penn #IamAliveAndKickn
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ClinicalTrials #Vanderbilt #youngadultcancer #colorectalcancer #lynchsyndrome #menshealth
Discussing Lynch Syndrome, International Society Gastrointestinal Hereditary Tumors (InSIGHT)