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PODCAST

AliveandKick"n the podcast

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.

health & fitness parenting

All Episodes

01:05:53

AliveAndKickn Podcast - Roxy Thunder

AliveandKick"n the podcast ·

2024/08/17

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

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41:35

AliveAndKickn Podcast - LeeAnne Hayden

AliveandKick"n the podcast ·

2024/06/09

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.

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51:54

AliveAndKickn Podcast - Allison Rosen

AliveandKick"n the podcast ·

2024/05/27

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

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42:19

AliveAndKickn Podcast - Scott Weissman

AliveandKick"n the podcast ·

2024/05/01

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

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45:51

AliveAndKickn Podcast - Dr. Asaf Maoz

AliveandKick"n the podcast ·

2024/04/21

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

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35:29

AliveAndKickn Podcast - Emily Goldberg

AliveandKick"n the podcast ·

2024/03/30

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

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38:24

AliveAndKickn Podcast - Cody Mitchell

AliveandKick"n the podcast ·

2024/03/06

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

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01:00:27

AliveAndkickn Podcast - Erica Nelson

AliveandKick"n the podcast ·

2024/02/26

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

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47:14

AliveAndKickn Podcast - Dianne Hammer

AliveandKick"n the podcast ·

2024/02/18

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

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59:31

AliveAndKickn Podcast - Rachel Travis

AliveandKick"n the podcast ·

2024/02/05

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.

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51:12

AliveAndKickn Podcast - Michelle Vina-Baltsas

AliveandKick"n the podcast ·

2024/01/25

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

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45:08

AliveAndKickn Podcast - Amber Eastman

AliveandKick"n the podcast ·

2024/01/08

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

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33:34

AliveAndKickn Podcast - Srinivas Pai

AliveandKick"n the podcast ·

2023/11/21

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

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29:18

AliveAndKickn Podcast - Jaystan Davis

AliveandKick"n the podcast ·

2023/11/04

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?

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35:28

AliveAndKickn Podcast - Dr Toni Seppala

AliveandKick"n the podcast ·

2023/10/08

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

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33:50

AliveAndKickn Podcast - Erin House

AliveandKick"n the podcast ·

2023/09/25

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

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35:49

AliveAndKickn Podcast - Rachelle Manookian

AliveandKick"n the podcast ·

2023/09/04

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

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33:41

AliveAndKickn Podcast - Dr Jose Perea Garcia

AliveandKick"n the podcast ·

2023/08/31

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.

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38:55

AliveAndKickn Podcast - Dr. Tiago Biachi

AliveandKick"n the podcast ·

2023/08/10

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.

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36:17

AliveAndKickn Podcast - Dr William Karnes

AliveandKick"n the podcast ·

2023/07/11

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.

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170 results

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