Today on the show, I welcome Linda Bohannon, President of The Cancer Support Community, the largest nonprofit provider of social and emotional support for anyone touched by cancer. An oncology nurse by trade, Linda and I go back to a time long before Stupid Cancer. In the mid-2000s, she was running "Advocacy Relations" for Lilly Oncology during the official US launch of Lilly Oncology On Canvas, which was a groundbreaking effort for its time that you will hear more about in our conversation. Now, The Cancer Support Community itself has a 40-year backstory worth appreciating, and Linda takes us down that rabbit hole, including her stint as a high school student volunteering for the organization she would one day lead. We also talk about the current state of nursing, including COVID's impact on the profession, the hope for a turnaround in the nursing shortage, the struggles of carrying the emotional burden of work home with you, rounded out with nonprofit leadership lifehacks during a global pandemic. Enjoy the show.

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I've got a treat for you today because my buddy Steve Goodman here with live in-studio. He is sitting about nine feet away, chomping at the bit to chat about all the shared things we find aggrieved, inane, downright agitating, and yet possibly hopeful. The man's a mensch, first and foremost. He's also a 30-year veteran TV producer and cybernetically engaged 1980's trivia junkie. For this episode, he is here as the big brother and caregiver to his sister, the late Annie Goodman, my co-host on The Stupid Cancer Show from 2013-2015. After we rant on about what the hell a lower-third is, we get real and talk about love, hope, strength, loss, grief, perseverance, Annie's footprint, her impact, her legacy, and the sibling dynamic through thick and thin. Some of you may have heard Annie's voice on the air with me back in the day. She was one of the kindest, fiercest, and most inspiring human beings I have ever known. Her loss was tragic, unnecessary, and will forever remain a permanent bookmark of grief for our community and for me. Please enjoy this tribute to my dear friend and partner-in-crime in the young adult cancer movement, the late Annie Goodman.

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On the show today, the legendary Julie Larson, speaker, educator, psychotherapist, and luminary, legacy young adult cancer advocate. As one of the few people who have been consistently working in the same career profession they went to school for, Julie may consider herself a midwestern gal transplant to the big city but, after more than 15 years in the space, she has more than earned her credibility as one of the early progenitors of the young adult cancer movement. Her first “not so shabby” big stint was to essentially create from scratch the first adolescent and young adult cancer program for CancerCare to give you some perspective. Now, if you don’t know what CancerCare is, we get into it during the show but just know this was a huge deal in the annals of patient advocacy and AYA survivorship programming. I was privileged enough to work with her as that effort was getting built out, and I have watched her rise to literal superstardom in our community. As someone who was “there” before social media became the best thing, then the worst thing, and now a “somewhat tolerable in small doses thing,” “she has a vantage and perspective on how far we’ve come and yet how far we still need to go. From the days of MySpace to today’s shitstorm of COVID, telehealth, and mental health calamity, Julie Larson is the voice you want on the other end of the phone call to help make some sense of the madness. Enjoy the show.

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Across the years running Stupid Cancer, I can’t tell you how many times I was approached by other young adult chronic disease patients and communities asking if we’d ever think of franchising the brand. You know – Stupid Lupis. Stupid Fibro. Stupid MS. Stupid Type 1. You get the point. We all need a community of our peers who — as we say — “get it” because they’ve already “got it” — a community where there are no judgments and no stigma. Well, while there may not be a “Stupid Endometriosis,” Melissa Boudreau is as close as it gets with her podcast, “The Cycle” — and she joins me today for a 101 breakdown on the disease. Melissa was a C-Suite marketing professional whose young life was interrupted, to say the least, with misdiagnosis after misdiagnosis and an ever-increasing sense of fear and isolation that forever changed her formidable years. No one ever asks to become an expert on a disease they didn’t ask for, but Melissa is a genuine voice for the 1 in 10 women worldwide who have Endometriosis. Enjoy the show

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Just when I thought I was the only 20-something with cancer adrift in the 1990s with nary a support group or a cancer buddy, along came an intro to my friend and mentor, Dr. Julia Rowland. Widely recognized as an international scholar and foremost leader in the psychosocial aspects of cancer care broadly—and survivorship specifically—it cannot be understated how seminal she has been working on the front lines of early survivorship research since the passage of the National Cancer Act of 1971. Without her seminal work and influential leadership across the past 40+ years, today’s narrative on quality of life, fertility rights, navigation, decision making, access to care, mental health, and more might not exist. As the first director of the “newly christened in 1996” Office of Cancer Survivorship for the Divison of Cancer Control and Population Science at the National Cancer Institute, she has been working on behalf of millions of patients, survivors, and caregivers to improve lives. And her role as a Board Member of The National Coalition for Cancer Survivorship has only amplified her voice and her influence.

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On the show today, another epic DeLorean throwback to the past episode with Halle Tecco, an origin story convened during the heyday of LIVESTRONG and born of a shared desire to make cancer suck less. Aside from being one of the most ambitious, talented, relentless, and startup junkie-ist(?) actual innovators, I know — and besides the FOMO I have from whatever it still means to have a blue checkmark on Twitter — Halle has consistently been at the forefront of “what’s next” at the intersections of patient advocacy, health tech, and startup culture. And while her BS, MPH, and MBA may be great acronyms attached to her credentials, her real superhero power is being an inner social justice warrior while assembling incredible teams, and roosting on the observation deck manifesting actual progress you can see. Among many other things, we focus on her latest venture, Natalist – borne of pure passion and her own condition. Beyond swapping war stories between two IVF parents and the perhaps ill-conceived notion of the cost/benefit around parenting, there’s talk of copper landlines, Friendster, and while none of us knew what was in store for when we met in the mid-2000s, we all knew we would do it together as advocates.

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I’ve never said the words “Cancer Nerd and Google Scholar” in succession before, but that only partially describes the epicness of my guest today, one Liz Salmi — self-proclaimed “Citizen Scientist” and “Professional Medical Nerd.” — and I attest that both of these are appropriate, accurate and deserved. Diagnosed with brain cancer at 29 and forced down a rabbit hole of a whole bunch of other horrible shit, Liz became the accidental advocate we needed when the Interweb was just becoming the Internet, and when the online support communities we often take for granted barely existed. Her self-made background in digital communications came in very handy when she realized her higher purpose in becoming a human Babelfish capable of helping clinicians and academics speak “patient” in understandable layperson language. She is also a co-founder of the #BTSM community on Twitter, inspired by the patients and researchers who had come together for the #BCSM tweet chats in 2011. She’s a force, the hero nerd we deserve, and, man, does she love her patient portals (said no one ever but her). Join me in also celebrating her 12th brain cancerversay and enjoy the show.

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“What do you do with the mad that you feel?” — One of the more definitive quotes from the definitive Mr. Rogers. For my guest today, David Richman, the choice he made after losing his sister to cancer was to turn pain into passion, lace-up, and in true Forrest Gump fashion, JUST START RUNNING. 85 miles between Cancun and Tulum in Mexico. 104 miles up the Pacific Coast Highway. 50 Iron Man Triathlons. And then an introspective search for similar and familiar voices to learn and heal from that turned into a 5,000-mile bicycle tour from California to Florida to New York City. I feel even more out of shape just saying those words into the microphone. David’s self-discovery journey brought him comfort, closure, and common threads, and his new book, “Cycle of Lives,” is proof that grief, loss, and bereavement can be opportunities you never expected to have. Prepare to be inspired and enjoy the show.

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On the show today, Alan Balch, CEO at the Patient Advocate Foundation and the National Patient Advocate Foundation. After we reconcile that Alan is one of the few people actually doing what they studied in college, and without triggering his inner political economist, we talk about the fundamental question: Why do patient advocate groups even need to exist in the first place? After all, if they did what they’re supposed to do, there wouldn’t even be a need. But there is. When we say the words “the system,” it always implies an ominous, immovable, intractable and unwieldy, monolith. Is “the system” everything we think? A consumer supply-chain funnel of supply-only mechanics that no one person ever desires to become part of? Seriously, who can’t wait to get chemo one day and fight with their insurance company? Who? I’ll wait. Alan and I go on to deconstruct the phrase “healthcare is a right,” banter about the forensic insanity behind how their case management and financial assistance mechanics work on behalf of millions. Also, who stands to profit in some magical unicorn world where every cancer patient is guaranteed protections to ensure they get to determine their own outcomes without dealing with FINANCIAL TOXICITY? Enjoy the show.

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On the show today, a luminary in the annals of cancer advocacy, the one, and only Gwen Darien. While she may be the EVP for Patient Advocacy at the National Patient Advocate Foundation and the Patient Advocate Foundation, her story runs so much deeper; 30 years into the past actually where a young, passionate student of photography and contemporary art had her life interrupted with a cancer diagnosis and found herself on a different path, one born of her condition but not one to define her identity. Gwen is the creative force behind not one but two groundbreaking cancer magazines, MAMM, a women's magazine for anyone whose life has been affected by breast or reproductive cancers, and CR Magazine, the official publication of the American Association of Cancer Research. No small doings here. Throughout the course of our conversation, I make continued reference to a recent commentary she published with the National Academy of Medicine about her life's work in three chapters. There will be a link in the episode description to check it out. Gwen has been a hero of mine and a source of inspiration who has shown me how to truly make the most of the time that has been given to us. Enjoy the show.

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On the show today, I welcome one of my advocate heroes, Erin Zammett-Ruddy, a young adult cancer survivor I met during the LIVESTRONG days in the early 2000s. She may have barely crossed the 5-year survivor finish line (that’s what we called it back then), but she was — and still is — a force to be reckoned with. She was a “big-time big city” magazine journalist writing for Glamour when a random asymptomatic diagnosis of Chronic Myelogenous Leukemia changed everything. She broke the mold and went public — something considered shocking for the time — and began a now legendary and award-winning column entitled “Life with Cancer" — making her one of the first media cancerlebrities of all time. There’s so much to unpack with Erin, the least of things her choice to temporarily quit chemo to become a biological mom, confronting her sister’s cancer diagnosis two years after her own, maintaining her career, speaking all over the world, raising a shit ton of money for charity — you get the picture. Now a happily thriving 40-something raising three kids and married to the same man who stuck with her during the dark days, Erin’s still here and kicking more ass than ever with her new book, “The Little Book of Life Skills: Deal With Dinner, Manage Your Email, Make a Graceful Exit, and 152 other Expert Tricks". Enjoy the show.

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On the show today, I welcome two very inspirational guests. Fard Johnmar is a digital health innovator I met in 2005 before “The Internet” was a thing. He was ahead of his time then, and he’s ahead of his time 15 years later. And Denise Pines is truly a force to be reckoned with. Here come lots of well-deserved syllables: President of the Medical Board of California, social justice warrior, award-winning documentary film producer, Founder of WisePause, and the energy behind the FemAging Project, which is the subject of today’s show. Does aging suck? Or is it an opportunity? What does “Aging Well” mean? How do we know what to expect when we can’t possibly know when we’re expecting to turn 40? 50? 60? What role does peer-to-peer lifehackery play to help women navigate this part of their lives with support, dignity, and style? This is FemTech in real-time, and it’s helping to specifically raise the voices and the profiles of older women of color, a generally overlooked group in innovation research, investment, and development. From the nice-to-have to the need-to-have, it’s less about dressing for success as it is to dress for the body you have now. And YES, I just said that whilst staring at my dad bod. Enjoy the show.

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Today’s show is a little different. My guest, Michelle Begina, is a financial advisor, speaker, author, and — at least in my own opinion — is a money therapist. Certainly, one of the more hybrid experts I’ve had the privilege of speaking with. With a great deal of intentional vulnerability and discomfort on my part, we talk about money. It doesn’t just make the world go ‘round; it’s a topic that unites everyone and — like math — is a universal language where judgment, stigma, guilt, and the forces of good and evil duke it out on a day to day basis. In the interest of channeling my fellow expatriated nonprofit founders and executives who went into the private sector to “earn a living,” there’s a lot to unpack there — and I am not shy about sharing my own personal sentiments on entrepreneurship, philanthropy, and guilt. The NPO business model is so flawed, it’s almost designed to fail, and COVID made that more apparent than ever. I also don’t live my life to be the richest guy in the graveyard and hedge my entire political belief system on the single-voter issue factor of our time — the “401k”. Life’s too short. So from “financial psychology” to “your money story” to “fiscal script” to the emotional weight and mental health issues surrounding leadership and just trying to get by in life, I hope you enjoy this alternate but related universe episode of Out Of Patients with Michelle Begina. Enjoy the show.

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On the show today, Dave Bjork, self-proclaimed Research Evangelist, young adult lung cancer survivor, and champion of the cause of “direct-to-research” philanthropy. What does that mean Well, here’s what I think it means. It’s almost too easy to donate and support cancer research, but it’s often a giant cauldron into which you throw your money and never know where it winds up. Cue the black and white informercial — “There’s got to be a better way!” How can I know where my research funding goes? Can I just avoid the middleman and donate to one specific doctor for a more immediate and tangible impact? I also learned that the actual process of research funding itself is insanely stupid and ridiculously antiquated. Anyone whose written a grant with a glass of Merlot knows what I’m talking about. Also — does the life sciences sector have a bad rap? All this and more on today’s episode Enjoy the show.

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Throughout the history of cancer advocacy, there the advocates who made us and the organizations who made us. And one such organization is the National Comprehensive Cancer Network, which is — for all intents and purposes — the “Good Housekeeping meets Consumer Reports” of all cancer standards of care, best practices, guidelines, and credibility consensus. Joining me on today’s show to speak to all that is my friend Marcie Reeder, Executive Director of the NCCN Foundation, which is their patient-friendly arm that collaborates with scores of nonprofits to make sure their information is trickled down to the patient and caregiver community as a vital support resource. Marcie lost her father to esophageal cancer when she was young. Her public service to advance the narrative and the imperative of access, awareness, and survivorship is a testimony to her passion and character and the very definition of cancer advocacy. NCCN is an incredible organization that does outstanding work on behalf of millions of people, and I hope this episode shines a light on their impact in the cancer community. Enjoy the show.

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Today’s a different kind of show. Not quite the “softer side of Sears,” but perhaps a more introspective look beneath the veil of mental health and all the things that piss us off, like cat posters. Seriously? Have we not yet gotten over cat posters? Today I welcome Marie-Elizabeth Mali, self-proclaimed “relationship alchemist,” two words I’ve never heard spoken in succession that we will break that down during the episode. In the cancer world, we talk about isolation as the number one mental health affliction of diagnosis and how finding your community is of paramount importance for many to not feel stigmatized or judged. But the same is true for relationships because we all have unmet basic human needs and too often find ourselves unwoke to becoming unwired. Marie-Elizabeth believes that we are all creative people in some way. I somewhat agree because, I mean, anyone can play the radio. [Ba Dum Tss!] But seriously, there is something afoot, exacerbated further each day by our current polarized climate, about aloneness vs. isolation, defensiveness vs. reflection, and exceptionalism vs. craving generosity and tolerance, Enjoy the show. Learn more about Marie-Elizabeth Mali at https://memali.com.

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On the show today, I welcome Michelle Rhee, young adult cancer survivor of Thyroid Cancer (you know, “the good one” I’M KIDDING) whose ordeal left her having over a dozen major surgeries, including open heart surgery for a related underlying rare disease. Back in the heyday when the young adult cancer movement was taking off, Michele was looking to take an active role in our startup culture. After being introduced, I helped land her an internship at the Children’s Cause for Cancer Advocacy, a landmark organization that everyone should know about, which helped launch my career in founding Stupid Cancer. She received BOTH her MBA and MPH in three years and, because she’s such an underachiever, went on to pursue a storied career thus far representing the voice of the patient at every company she’s worked for; including The National Brain Tumor Society, Takeda Oncology, Bluebird Bio, and now as the VP of Patient Affairs at X4 Pharma. She’s also traversed ALL SEVEN continents in a quest to find herself, make sense of the madness, and live her life on her terms. So, prepare yourself for an inspirational conversation amongst friends, and if my “conversation amongst friends” I mean “eavesdropping on our first phone call in 7 years,” well, then you’re in for a treat. Learn more about the Children’s Cause for Cancer Advocacy

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Today's episode of "Jen Horonjeff is Noncompliant" riffs off the news of Pfizer's COVID-19 vaccine safety and efficacy data. Jen has a convo with Matthew Zachary that starts off about vaccines and quickly dives off the deep end into a sea of public perception, personal preferences, and medical ethics. Tune in as we wade through how ableism, veganism, and animal memorial services relate to life-saving medicines. It's all proof positive that developing a vaccine is only half the battle and must be coupled with a robust communication strategy if we want widespread adoption of a COVID-19 vaccine.

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Today’s show takes us in a different but related direction into the dumpster fire of health insurance pertaining to employer-based care. Joining me is David Contorno, Founder of E Powered Benefits, which itself sounds jargony. Still, I assure you, he’s one of the more controversial and outspoken whistleblowers advocating in the space, and you may be surprised at all of the aha and gestalt moments revealed on the show. Everyone knows that there are benefits when we take a job, but what exactly are those benefits? Do we really read all the fine print? Does the employer genuinely have our interests in mind vs. the overly enticing cost-saving measures that limit your choices? Are we blindly accepting the iTunes Terms Of Service without reading all the fine print? It’s easy to confuse, comport, and conflate healthcare for health insurance. In the end, it all comes down to who writes the check on your behalf. Unfortunately the perversion of incentive-based care too often skews the medical establishment toward making recommendations and decisions on our behalf that are better for them than for us. It’s nice to say the healthcare system is broken, but the real conspiracy is that there isn’t one because this broken system is actually working by design and exactly as it was planned. Buckle up and enjoy the show. Learn more about David on LinkedIn.

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On the show today, I welcome Glen DeVries, Co-CEO at Medidata, the most used platform for clinical trials worldwide. Not too shabby, I say. Among many other things, we dig into his new book, "The Patient Equation: The Precision Medicine Revolution in the Age of COVID-19". Glen is unique in the annals of woke brainiacs who live in the hyper multi-syllable world of science, data, and related semantic geekery AND YET he is hyperaware that average Jane's and Joe's like you and I prefer to actually understand the words emanating from the mouths of "science people" that may or may not be critical in helping us make life-altering medical decisions. Yes, Glen is The De-Jaronator, says me. He's a controversial and authentic personality. As a bonus, he's also an 80's nostalgia junkie like me, so prepare for some random pop culture references that you may or may not need to IMDB. We also chat about Moore's Law and how it applies to the intersection of biology and technology, how we might need to reframe the concept of an impending robot apocalypse, and whether HAL from 2001: A Space Odyssey could be our future gatekeeper to a clinical trial. This episode moves pretty fast. If you don't stop and listen around once in a while, you could miss our reference to SneakerNet. More at https://www.medidata.com.

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