Episodes

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 …

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…

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-…

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…

“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. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://ar…

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 me…

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…

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 pic…

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 innovatio…

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 gr…

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. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://…

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…

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 curren…

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…

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. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 e…

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…

On today's episode of "Jen Horonjeff is Noncompliant," Jen talks with Gabe Howard, patient advocate, author of "Mental Illness is an Asshole," and host of the PsychCentral podcast. As a "mental health advocate," Gabe first unpacks how ridiculous it is that all mental health gets lumped together. And herein lies the problem: There is often a one-size-fits-all approach to mental health, one that usually leaves many people behind, especially those who lack essential resources like food, shelter, and insurance, as well as tech and broadband. Please tune in to hear the barriers many patients face when trying to improve and maintain their mental health, along with some of the best analogies you've ever heard. More about Gabe Howard here. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Today, instead of my usual shenanigans, I’d like to treat you to something very special that we have been working on here at OffScrip Media.One of the privileges we have here besides creating and producing epic shows on our network like Am I Dying, Brave New Weed, and NORDpod, is the ability to diversity and expand to producing original series — and we think you’re really going to like what you’re about to listen to. We are handing over the entirety of today’s show to episode 1 of The #BCSM Podcast, a 3-part narrative about how breast cancer patients dared to be the change they wished to see, saw an opportunity to fill a need and created the Breast Cancer Social Media Community, or BCSM. What began in 2011 as a conversation on Twitter between two intrepid young adult breast cancer survivors has evolved into a global network of patients, caregivers, clinicians, and researchers dedicated to empowering those affected by breast cancer. Once you listen to this episode, I urge you to subscr…

Anyone remember the old Vince Guaraldi Trio song “Cast Your Fate To The Wind?” Look it up, kids, because it’s got almost nothing to do with this show other than being a legendary tune and a related metaphor to today’s BONUS episode. Kids. School. Parenting. Work. — hard enough WITHOUT COVID. WITH COVID, its a dumpster fire shit storm INSIDE another a dumpster fire shitstorm. Today’s show is a real-time steam valve release with two of my high school friends, returning champions to the show Karen Marinelli and Elura Nanos. Both were guests on Episode 2 on March 18th, and Elura returned for our first COVID Back-To-School insanity show on September 18th. There is no normal. There is no end. We are living every moment in the moment on stilts on top of eggshells riding a wooden raft on lava river during an earthquake while an asteroid approaches. Ah, you get the picture. We hope you nod your heads while listening because lord knows we’re not alone during this shitstorm and we’ve got to get …

On the show today, Authenticity Advocate/Speaker/Coach/Writer Erika Gerdes. Lots of self-descriptors there, but rest assured listeners, you're in store for an organic, no-BS kitchen table conversation about worthiness, insecurity, how being a people-pleaser doesn't please people. It's time to focus on the art of undoing the limiting beliefs that hold us back from whoever it is we want, need, and hope to be as carbon life forms on our small blue marble. I like to say, "Man plans and God laughs." (Or "Insert Deity Here" laughs) and Erika is no exception to that rule. Just when you think things are set straight ahead, and everything is going to plan… Sounds like "famous last words" to me. But when her 3-month old daughter faced a life-threatening spinal tumor, that's when real life kicks in, and where there plan is that there is no plan — and our vanity and quest for approval fly out the window for all the right reasons. Maybe we can all find strength when things aren't fine. I also lear…

On the show today – Pam Traxel, Vice President For Alliance Development at the American Cancer Society Cancer Action Network, known in acronym-land as ACSCAN. Hunkered down deep in Washington DC’s beltway, ACSCAN is the dedicated policy arm of The American Cancer Society — and as appendages go, it’s a good choice. We all need to strong-arm things from time to time to elicit even the slightest semblance of progress and justice in this country. ACSCAN’s mission is to ensure that elected leaders make ending suffering and death from cancer a top priority. As opposed to, I guess, ending suffering from too many Pumpkin Spice Latte commercials, which, while not apples to apples, is, in the broadcaster’s opinion, an egregious affront to the laws of hot beverage nature that should be toned down just a bit. The key to getting anything done in Washington — at least as far as getting policies enacted to help people facing cancer — is advocacy; more so, the stories of those advocates who, with one…

On the show today – The CD-ROM. What is it good for besides Microsoft Encarta (look it up, kids) and free AOL accounts in 2004? Well, for one uniquely intrepid and nonprofit founded by Pam Omidyar, the CD-ROM became the intervention that would change the lives of teens living with cancer for the better all around the world. HopeLab is a social innovation lab committed to supporting and improving the health and happiness of young people. And joining me is HopeLab’s CEO, my friend and advocacy partner in crime, Margaret Laws. What is “behavior-change tech?” How can you game-ify loneliness as a predictor of depression and suicide amongst college students, especially during a pandemic? How in the world does “human-centered design” intersect with young adult cancer patient advocacy? What happens when you harness the tools of empathy as a social connection vehicle to normalize identity and end the pity party? All that and oh so much more as we shed light on HopeLab, one of the most impactfu…

There are missed connections, and then there are missed connections. And this one’s a doozie. Like me, Dr. Joe Abdo was diagnosed with brain cancer in 1996 and — somehow — 25 years later, is still here. Like me, Dr. Joe Abdo’s birthday is May 29th. And like me, it took us way too long to get our lives back in order only to meet 15 years later, grateful that the universe finally brought us together, and kick off an incredibly kismet Gemini friendship. Even weirder – and this is just icing on the cake — his office is literally three doors down the block here on Fulton Street in downtown Manhattan. In any case, you’re going to like this episode not just because it’s an incredibly organic reunion conversation amongst cancer buddies but because Joe is definitely someone who should be on your radar. His pioneering work in genomics, immunotherapy, and biotechnology have helped millions of patients facing rare cancers in the gastrointestinal space. And his company, Stella Dx, is invested in e…