On today's show, my good friend, long-time partner-in-crime advocate, and Princess Leia Jedi Master of Health Tech, Susannah Fox, who I consider to be one of the most insightful, introspective and influential unicorn, renaissance human beings around. Susannah was the Chief Technology Officer for the U.S. Department of Health and Human Services and is currently on the boards of Cambia and Hive, and provides research and advice about navigating the intersection of health and technology at her consultancy, Internet Geologist. Her passion has been—and quite possibly forever shall be—the fundamental power of peer-to-peer health. You know, that whole "You're Not Alone" thing? "Connecting with people with shared and similar experiences where there's no judgment or stigma?" "Tribalism done right for the purpose of lifehacking your way through acute illness and chronic conditions?" That is Susannah's passion. See if you can spot the gestalt moment where I nearly lost my mind (in the best sense) after hearing that—of all places — the thrush of modern-day health lifehackery is coming from Amazon reviews. On that note, enjoy my conversation with Susannah Fox. Follow Susannah on Twitter @SusannahFox.

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On today's show, we welcome one of the most influential human beings of my career: Dan Pallotta, champion of charity and the entire nonprofit business sector. Dan's take on how we as a culture think about charity the wrong way planted a bedrock philosophy in my head for how I was going to grow and lead Stupid Cancer to scalable success without the pitfalls of donors complaining about "Overhead." "I'll give you money but don't spend it on electricity. Only programs." Dan's much-ballyhooed book "Uncharitable: How Restraints on Nonprofits Undermine Their Potential" has a new, more digestible School House Rock version called "The Everyday Philanthropist" that I encourage every single nonprofit Board member, staff member, and donor to read immediately. My favorite quote from Dan is this: "Human. Kind. Be Both." Dan's Latest Book: The Everyday Philanthropist. Dan's TED Talk: The Way We Talk About Charity is Dead Wrong

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Alice Crisci is a cancer survivor, entrepreneur and activist. She founded MedAnswers to speed consumer access to specialty medicine. Her company's first app product, FertilityAnswers, is the only social network for fertility.

FertilityAnswers connects users struggling to conceive with multi-disciplinary experts who can answer their anonymous fertility questions. Alice also founded the oncofertility charity, Fertile Action, three weeks into her breast cancer diagnosis at 31-years-old, and is the ecstatic mom of a fertility preservation miracle son and their pet menagerie who sometimes even let her practice daily meditation in peace and quiet.

More at http://MedAnswers.com and http://www.fertileaction.org/

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In 2016, Sara Woods was diagnosed with Clear Cell Sarcoma, a very rare form of Sarcoma, which is in itself a rare form of cancer. Today in 2020, Sara is 17 years old.

This week on Out of Patients, we've set aside two entire episodes to focus in on the story of what Sara's mother Lennie Woods did when Sara's diagnosis landed on her family. This is the story of the patient experience of Sarcoma, and of Sara's Cure: the bold non-profit organization created by Lennie, along with her fierce friend and COO Molly Liska.

Together Lennie, Molly and the entire Sara's Cure community are lifting up not just Sara but every other Clear Cell Sarcoma patient in the world to force momentum and critical mass in order to drive the research needed to produce a viable therapeutic approach to CCS. This is what patient advocacy looks like.

Part 2 of 2

Sara's Cure: https://sarascure.org/

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In 2016, Sara Woods was diagnosed with Clear Cell Sarcoma, a very rare form of Sarcoma, which is in itself a rare form of cancer. Today in 2020, Sara is 17 years old.

This week on Out of Patients, we've set aside two entire episodes to focus in on the story of what Sara's mother Lennie Woods did when Sara's diagnosis landed on her family. This is the story of the patient experience of Sarcoma, and of Sara's Cure: the bold non-profit organization created by Lennie, along with her fierce friend and COO Molly Liska.

Together Lennie, Molly and the entire Sara's Cure community are lifting up not just Sara but every other Clear Cell Sarcoma patient in the world to force momentum and critical mass in order to drive the research needed to produce a viable therapeutic approach to CCS. This is what patient advocacy looks like.

Part 1 of 2

Sara's Cure: https://sarascure.org/

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On today’s show, you’re going to hear from my friend and colleague Bruce Cozadd, Co-founder, Chairman and CEO of Jazz Pharmaceuticals. And NO — this was not a conversation about the glamorous Pharmaceutical Industy and all its unique facets — shall we say — worthy of endless discussion. I wanted to talk with him – as my friend, my peer, fellow Founder and CEO — about leadership during COVID and all the other crazy shit going on. Listen to Matt and Bruce on The Stupid Cancer Show here: https://offsc.rip/mzbcscs

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Dr. Bob Bollinger is the Raj and Kamla Gupta Professor of Infectious Diseases at the Johns Hopkins University (JHU) School of Medicine, and he holds joint appointments in International Health at the Johns Hopkins (JH) Bloomberg School of Public Health, and in Community Public Health at the JH School of Nursing. He is Founding Director of the Center for Clinical Global Health Education (CCGHE), Director of the JHU Fogarty India Program, and Associate Director for Medicine of the JH Center for Global Health.

Sebastian (E.) Seiguer, JD, MBA is CEO and co-founder of emocha Mobile Health, a company which uses video technology to secure medication adherence. Fluent in German, Spanish and English. Sebastian holds a JD from Columbia Law School and an MBA from the Carey Business School at Johns Hopkins.

Learn more about eMocha Health at https://emocha.com.

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Dr. Saralyn Mark, first and foremost, is a Leader of the American Medical Women’s Association (AMWA). She served as the Senior Policy Advisor to the White House Office of Science and Technology during the Obama administration working on the Ebola outbreak in 2014. At the Department of Health and Human Services and NASA, she was the first Senior Medical Advisor to the Office on Women’s Health. She joined Matthew remotely to cut through the clutter, break down some of the COVID-19 mumbo jumbo, and level-set reality a bit while the world is on fire. Check out Dr. Mark’s book Stellar Medicine: A Journey Through the Universe of Women’s Health, available wherever books are sold.

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Matthew Lamb, Ph.D. is an Assistant Professor or Epidemiology at Columbia University Medical Center. He focuses on infectious disease prevention, treatment, and scale-up. His research focuses on identifying best practices in public health approaches to HIV prevention, service delivery, and treatment in resource-limited settings.Dr. Lamb focuses on applying causal inference in implementation settings. He teaches courses in the Epidemiology department on introductory epidemiology and biostatistics, applications of epidemiologic research methods, and advanced techniques in epidemiologic methods. Dr. Lamb works in the Strategic Information unit at ICAP-Columbia University.

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Andrew and I had the pleasure to welcome in-studio Patrick James Lynch, a true renaissance man of many hats who was born of his condition — for a DOUBLE INTERVIEW.

If I were to fully divulge all that is Patrick James Lynch, this intro would be longer than the episode. 

So in brief, he is one of world's most influential hemophilia patient leaders in addition to being a filmmaker, actor, producer, media guy, keynote speaker, and Founder/CEO of both Bloodsteeam Media, a rare and chronic disease podcast network and Believe Limited, a unique storytelling agency that creates entertainment to affect change.

This man is a frieken specimen. Advocates love him. Activists want to be him. And I unapologetically may have developed little man-crush throughout getting to know him. 

This episode is on the longer side of what we usually publish, but, I assure you that if you've got the time, it's worth the listen. And as an added bonus, a recurring theme of Steve Guttenberg — along with mentions of The Golden Child, the phrase “penis breath” from ET, and Wilfred Brimley — will assure all you GenX’ers that the 80s are alive and well right here on the pod.

Please enjoy this double intervew with Patrick James Lynch.

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Dr. Greg Hammer is pediatric intensive care physician, pediatric anesthesiologist and author of the new book “GAIN Without Pain The Happiness Handbook for Health Care Professionals,” which speaks to the philosophies of mindfulness to reduce or mitigate physician burnout — and if there were ever a time for our "Spidey Senses" to be tingling about physician burnout, it’s right now while the world is burning.

GAIN Without Pain on Amazon

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Matthew and Andrew welcome cancer survivors Nina Beaty, Creator, The EmPat Cancer Project, and Katie Brown, Vice President of Support and Survivorship Programs at The LUNGevity Foundation, to opine on the current status of lung cancer in America and around the world. Issues of stigma, the increasing prevalence in young women, new treatment options, and how to navigate the COVID-19 pandemic are just some of the pressing topics we cover in this crucial episode.

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Peter MacDowell is the Clinical Director of Rochester Dermatologic Surgery and former Co-Director of Clinical Trials Office at the Wilmot Cancer Institute. If that last name sounds familiar, well that’s because Peter is the brother of Andrew MacDowell, my Co-Founder, and COO here at OffScrip Media. Sibling rivalry be damned — and while we may have reinforced some established biases between upstate and downstate New York — we had a fantastic conversation down the rabbit hole of clinical trial treatment, management, and administration in the 21st century.

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How does one "Schoolhouse Rock" the interesting world of Clinical Trials? On the show, Matthew and his Co-Founder/COO Andrew MacDowell are joined by Medaptive Health’s co-founders Eric Kroll and Jeremy Block to help break down and de-jargon what exactly is going on in the world of trials, patient advocacy, drug approvals — and the ever evolving role of Industry, for better or for worse.

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Six music Emmys, two Grammy nominations, four gold records, seven Public Television specials and 8 million records sold. After more than three decades as an international entertainer, John Tesh is a living legend. In his new book, "Relentless: Unleashing a Life of Purpose, Grit, and Faith," Tesh describes how the obstacles that shaped him—including being suspended from college, living homeless for months, and facing a deadly disease—shaped his remarkable life.

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In this sponsored episode, Matthew sits down with his friends to talk all about the glamorous issue of Xerostomia, otherwise known as "Dry Mouth."

This is a problem for millions of Americans, but no one talks about it. Why don’t we talk about it? Maybe it’s because when your mouth is dry, talking is the last thing you want to do. There are way too many causes of dry mouth, such as stress & anxiety, cancer treatment, antihistamines, menopause, alcohol or cannabis, vaping, coffee, and nearly every prescription medication on the market. 

Introducing Moisyn for dry mouth relief.

Not only does Moisyn work, but it’s Clinically Proven, Dentist- Recommended, Naturally Derived, Non-Toxic, and long-lasting. It freshens your breath, and it’s made in the USA.

So what else do you need to know? it’s clearly time for all of us to Moisyn Up and make dry mouth suck less.

Head on over to DryMouthSucks.com and save 15% off your order. No coupon code needed. The Discount will be automatically applied at checkout.

That’s DryMouthSucks.com 

Special Guest:

Shenda Baker

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Too often, patients are blatantly taken advantage of by Industry who profit off of our stories and our experience dealing with a disease we didn't ask to have. If our experience is so critical to Industry's bottom line, there should exist fundamental compensation standards under which which they operate. Period.

Matthew Zachary welcomes OffScrip Media Senior Producers Andrew MacDowell (Co-Founder and COO,) Jen Horonjeff (Founder/CEO of Savvy Coop) and Sandy Vassos (Nonprofit Executive and OffScrip Media Advisor for Strategic Relationships)

Related Articles —>

RIP Health Conferences

RIP Health Conferences (Part Deux)

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Jean-Luc Neptune, MD MBA, or JL as he is known, is a serial entrepreneur and a digital health pioneer. He’s a licensed physician in New York State, founder of Suntra Modern Recovery, serves as Entrepreneur-In-Residence at the Hospital For Special Surgery here in NYC, and if that’s not enough, the man has an MBA from Wharton. What makes this episode so special, is that JL just recovered from COVID-19. And this is not just a telling of the story of "when the Doctor becomes the patient", but a testimony and a warning, and an education into our modern day reality.

JL's LinkedIn Profile

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Craig DeLarge is a Digital Health Strategist and Educator at the Digital Mental Health Project, a project aimed at effectively using digital technology in the mental health field, aka MentalTech, to combat mental illness. His main missions are to improve health and build up leaders. Craig has also worked with companies such as IMS Health (IQVIA), CMI/Compas, J&J, GSK, Novo Nordisk, Merck and Takeda Pharma International (Singapore) to positively impact the health community. Craig teaches & lectures on various subjects relating to business, communications, leadership, storytelling and visual literacy at the university undergraduate and graduate levels. In this episode, we go into the importance of mental health, the work Craig is doing at the DMHP, mental health tips during COVID-19, as well as bonus tips.

Resources Mentioned In This Episode:

Blog Post —> StressTech & COVID-19

Mental Health America, https://www.mhanational.org/

National Alliance on Mental Illness, https://www.nami.org/

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Immunotherapy and Policy. How can the FDA evolve to help advance and support novel approaches to medicine? How does the field of immune-driven diagnostics serve as a case in point for the need for evolution in existing regulatory frameworks?

Special guests:

Meghan Gutierrez

Chief Executive Officer

Lymphoma Research Foundation

Leo David Wang, M.D., Ph.D.

Assistant Professor, Department of Immuno-Oncology

Assistant Professor, Department of Pediatrics

City Of Hope

This series is brought to you ad-free by Adaptive Biotechnologies

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