AliveandKick'n the podcast

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.

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 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 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.