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Patient Leader Podcasts

Outstanding health podcasts created by patient leaders.

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Patient Leader Podcasts

Latest Episodes

Share Your Story: Patricia Doucet

Patricia Doucet speaks and writes with clarity, compassion, and humor–encouraging women to never give up. A Christian wife, mother, cancer survivor, cancer caregiver, divorcee, mental health and relationship coach, artist, and pianist–she is on a mission to inspire women who are on their own journey–from brokenness to beloved. 02:45: It was very slow-growing thyroid cancer.  04:14: I got another lump in the same place. 06:17: I have never heard of that kind of surgery. 08:54: Did you say anything to him at the next follow-up appointment? 11:05: I did a lot of therapy so I could keep my neck upright. 13:06: She had melanoma before I got cancer.  14:37: How was your experience as a caregiver different than when you were a patient?  15:06: What was your worst moment in those five years? 17:31: She had gotten breast cancer quite young. 19:20: What was your best moment?   22:17: I didn't learn how to love myself 100% until my 40s.  23:27: What is one thing you wish you'd known at the beginning of your cancer journey?  24:26: If you could do one thing to improve health care in Canada, what would it be and why? 25:56: Thriver Rapid Fire Questions Resources Patricia's website  
September 30, 2022
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A Groundbreaking Gene Therapy In Record Time to Cure His Son with SPG50 Sets a New Course For Future Rare Disease Treatments with Terry Pirovalakis

ONCE UPON A GENE - EPISODE 154 A Groundbreaking Gene Therapy In Record Time to Cure His Son with SPG50 Sets a New Course For Future Rare Disease Treatments with Terry Pirovalakis Terry Pirovolakis is a rare disease crusader and father to Michael, who has SPG50. He made a gene therapy for his son in only 18 months. The work he has done will also transform the way rare diseases are treated. He's hosting free monthly 101, 102 and 103 gene therapy courses to help other families advance their programs. Learn more by visiting Terry's website, cureSPG50.org or by connecting with him on social media. EPISODE HIGHLIGHTS Can you share a little bit about Michael's diagnosis? Michael was born healthy, but wasn't hitting milestones like my other children. We learned through testing that he had a disease called Spastic Paraplegia Type 50 (SPG50). Shortly after the diagnosis, we began researching and reading articles, we flew to meet with experts in gene therapy and signed a contract a month later to start a gene therapy program which kicked off our journey. Is there a point where it's too late for gene therapy? I don't think it's ever too late for gene therapy. My perspective is that if children can get it from 1-6 months old, gene therapy can be a cure. After that, gene therapy becomes less of a cure and more of a treatment. Unfortunately for Michael, gene therapy is a treatment and not a cure, but our goal is to cure kids by getting SPG50 on the newborn screening panel so we can cure kids- not treat them.  What is your advice for other families who are on a journey to fund gene therapy and drug development? Families have to understand that a lot of money has to be raised and they have to be willing to give up a lot to get the money you need. You have to have a solid family and the right team. Get your community involved, get friends and family involved and think outside the box to spread awareness about your disease. I encourage families to take my classes and reach out to me throughout the gene therapy and drug development journey. CONNECT WITH TERRY Website https://www.curespg50.org/ Facebook https://www.facebook.com/CureSPG50 Instagram https://www.instagram.com/cure_spg50/ Twitter https://twitter.com/CureSPG50 Email [email protected] TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Once Upon a Gene TV https://www.thedisordercollection.com/
September 29, 2022
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HEALTH CARELESS // Birth Control Upticks, CDC Tomfoolery and One Hospital’s Fuckery

Matthew Zachary and Elura Nanos discuss an uptick in longterm birth control use by teens, how the CDC is subtly changing its COVID messaging in plain sight, and how one hospital in Virginia deserves lots of attention for the fuckery it's caused its patients.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 29, 2022
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[BONUS] Dear Cancer: What Is Biomarker Testing?

Welcome to "Dear Cancer," a takeover episode of Out of Patients with special guest hosts Dr. Mark Lewis, an oncologist from Intermountain Medical Center, and Stephanie Elsea, a volunteer patient advocate from The Lustgarten Foundation. Together with Matthew Zachary, Mark and Stephanie break down the latest cancer research medical jargon into human terms, especially with the help of another special guest, Matt's daughter, Hannah. With grace, humor, and passion, the three share personal stories that connect them deeply to this cause. They wish only to help patients strike that balancing act between hope and hope by banishing pessimism and embracing reality about their prognoses. Throughout the episode, the team covers everything from understanding different types of tumors, what biomarkers are (and their importance), and clinical trials can sound less, um.. "clinical." They also discuss the latest findings and some extremely positive results from the Crestone Research Study.See if biomarker testing is right for you, and sign up today at http://dearcancer.health/findout.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 28, 2022
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Meet The Expert: Dr. Effie Andrikopoulou

Dr. Effie Andrikopoulou is a Cardio-Oncologist and a cardiac Imaging expert caring for her patients in Birmingham, Alabama. She is passionate about providing excellent care driven by her core values of active listening, empathy, and respect. 02:05: I went from Greece to Baltimore. 03:59: Did you always want to be a doctor?  05:30: When I came to Baltimore, I also did research on surgery.  08:57: The clock starts ticking the minute the person comes to the hospital.  11:31: Tell us a little bit more about interacting with people who have cancer.  14:34: Every medication is helpful, but it comes with different types of side effects. 17:42: What has been your worst moment as a physician?  20:26: Did medical school prepare you to go through that experience knowing that some of your patients will die? 24:34: In the past couple of years, I've started digging deeper into psychology and leadership. 25:50: What has been the best moment?27:43: I always tell my patients the minimum that their heart needs to stay healthy is 30 minutes of decent-paced walking, five days a week.  31:08: She survived her cancer, but she was left with heart failure as a result of that.  34:27: There should be a bare minimum level of self-care that we do that will allow us to be present for our patients and their families. 36:30: If you could only do one thing to improve health care in the U.S., what would it be and why?  43:22: Thriver Rapid Fire Questions.  47:22: Aside from Cancer U, what's one resource you would recommend for cancer patients and caregivers?   Resources Dr. Effie at UABDr. Effie on LinkedInDr. Effie on Twitter
September 27, 2022
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From Chinese Linguist to Chief Medical Officer

My guest today is Dr. Richard Parker, Chief Medical Officer at Arcadia, an exciting venture focused on using "big data" to ensure the right information about care is delivered to the right patient when needed. What a concept! For the math nerds out there, they harness millions of data points—like your diagnosis, medications, zip code, etc.—to create a sort of flowchart and navigation tool. Rich tells me it's not Skynet, and we are not at the dawn of a robot apocalypse. What's even more interesting is how Rich got started in his career in Chinese linguistics and how that enabled him to his role as Chief Medical Officer for Beth Israel Deaconess in Massachusetts. Oh, and we rifle through the 1980s and compare notes on how dangerous playgrounds used to be. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 27, 2022
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Improving Inclusion Practices in Schools with the Inclusive Educator – Bre Gastaldi

ONCE UPON A GENE - EPISODE 153 Improving Inclusion Practices in Schools with the Inclusive Educator - Bre Gastaldi Bre Gastaldi is known as the Inclusive Educator and she teaches school districts how to implement inclusive practices. She's also a special education teacher. She joins me for a discussion on diversity and inclusion in all aspects of education and the school setting.  EPISODE HIGHLIGHTS Can you tell us about yourself and your work as an inclusion expert? I got into special education by way of my own neurodivergence. I was diagnosed with ADHD in middle school, studied psychology as an undergrad and I started understanding myself better and fell in love with psychology and working with kids. I got my masters degree and began teaching, eventually becoming an inclusion specialist. I was also looking for ways to include my students in a variety of activities. My students excelled because of it, the school culture shifted and I began working with other teachers and administrators to improve inclusion practices. I have since branched off and became the Inclusive Educator.  What is the biggest misconception around inclusion? Inclusion isn't a program because true inclusion exists within your child's general education classroom- it's not a class they go to. If only certain students can be in an inclusion program, it isn't inclusive. Inclusion is an undeniable sense of belonging from the time a child walks into a classroom. It's a feeling of belonging and being valued and celebrated.  How does inclusion affect a general education student? A 2008 analysis of several studies found that inclusion had a neutral to positive impact on neurotypical students in 81% percent of studies. When there's an inclusive classroom and culture, all students are learning more. School districts doing a good job being inclusive reveals an increase of graduation rates. Inclusion impacts general education students in that they improve in academics, but they're also socializing with a reduced sense of fear, they generally have a stronger self esteem and better sense of self. What are your top tips for inclusion? Let your child lead because they will tell you one way or another when they're ready to participate more. As a parent, be intentional about making positive connections with the multidisciplinary team. If your child isn't being included, start slowly with focusing on what their interests are. LINKS & RESOURCES MENTIONED The Inclusive Educator Website https://www.theinclusiveeducator.com/ Connect with Bre on Instagram https://www.instagram.com/the_inclusive_educator/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Once Upon a Gene TV https://www.thedisordercollection.com/
September 22, 2022
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HEALTH CARELESS // Strikes, Butts, and Bankruptcy

Elura Nanos and Matthew Zachary discuss Ryan Reynolds and his colonoscopy campaign, how J&J is dodging cancer patients through the Texas-two-step and why healthcare workers are striking around the country.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 22, 2022
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Susie Singer Carter Untangles Alzheimer’s in Film and Podcasts

Susie Singer Carter is a Los Angeles-based creative specializing in film and podcasting. She’s a writer, director, producer, and actress. She’s also an advocate for dementia caregivers having been on a journey with her own mother for 16 years. This inspired her to write, direct and produce the 2018 Oscar Qualified short film, “My Mom and the Girl,” starring Valerie Harper in her final performance. She’s also the host and producer of the award-winning podcast “Love Conquers Alz,” launched in December 2019, which received Best Podcast 2020 from the New Media Film Festival for Episode 6 featuring Leeza Gibbons. Susie is proud to have served as one of the faces seen in several awareness campaigns for Alzheimer’s Los Angeles, where she also trained to be a volunteer speaker. Unfortunately, Susie's beloved mother Norma Pecora passed away after we recorded this interview. In this episode, we discuss her long, exhausting, enriching dementia journey, how it made her a “better person,” and the idea that Alzheimer’s is sort of like The Curious Case of Benjamin Button. After the Podcast: Please leave a review and share this podcast with a caregiver or loved one on a dementia journey.  Read Susie’s AlzAuthors post Watch My Mom and the Girl Trailer: Vimeo YouTube Complete film: Amazon Apple TV Listen to or watch “Love Conquers Alz” Connect with Susie Singer Carter: IMDB WEBSITE MY MOM AND THE GIRL FACEBOOK TWITTER INSTAGRAM LINKEDIN WIKIPEDIA LOVE CONQUERS ALZ LINKS I LOVE LUCIFER LINKS Other references The Curious Case of Benjamin Button Dopesick *** About the Podcast Our podcast features authors who share their dementia journeys, talk about what led them to tell their stories in whatever medium they’ve chosen, and offer unique and painfully earned insights into life with dementia. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends in need of knowledge, comfort, and support on their own dementia journeys. AlzAuthors is a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ . Thank you for listening. AlzAuthors.com Want to be on the podcast? Here’s what you need to know.
September 20, 2022
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Effisode – Shake It Off

Intro music by Scott Holmes
September 20, 2022
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Sharing the Mic Ep04 – Financing the Global Fund to Fight AIDS, TB and Malaria

World leaders meet in New York this week, to commit - hopefully - $18 billion over the next three years to the Global Fund in its fight to end AIDS, TB and Malaria - as well as COVID-19, and in this episode, we are again sharing the mic with Frontline AIDS to explore how communities themselves lead country programs funded by the Global Fund, as well as the critical advocacy role they are playing right now to keep the world’s attention focused on the three diseases. Joining Ben are: Kanna Dharmarajah Lead HIV and Financing, Frontline AIDS Eddie Mkhatjwa, Project Manager, CANGO, Eswatini Yvette Raphael, Executive Director, Advocates for the Prevention of HIV in Africa, South Africa https://frontlineaids.org https://cango.org.sz https://apha.org.za https://www.theglobalfund.org #FightForWhatCounts #HIV #AIDS #TB #Malaria #COVID-19 #UNGA #UNGA77 #pandemics
September 20, 2022
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Why we Receive Experiences We Don’t Want and How to Change This, with Author & Facilitator, Barry Nicolaou

In this week’s episode, I am joined by Barry Nicolaou, a passionate facilitator of organisational cultural synergy and Best Selling Author. In this enlightening conversation, we discuss why so many of us receive experiences that we don’t want, and how we can change our perspective to have a more positive outlook.  Barry's ability to locate and define his true purpose in assisting others began in 2015. The Inspiration Barry absorbed one fateful day at a cemetery led him to write and publish a #1 Best Selling book on Amazon. His book, The 11 Master Secrets to Business Success and Personal Fulfillment outlines the 11 areas that intersect economic freedom with personal fulfillment.  His forte is in deconstructing the layers beneath cognitive fear, indecision, subconscious paradigms, inherited thinking, habitual thinking and their intimate relationship to real-world expectations and experiences. His presentation on Gratitude Leadership for corporations and numerous mental health programs have been added to his 1-1 work, assisting businesses to take a holistic look at their culture as an 'energy' that feeds straight to the bottom line.    Tune in to this week’s episode to learn: How our beliefs define our experiences & what this means for our thoughts  What pivotal moment changed Barry’s outlook & what it means to truly live ‘your’ life The three key elements that form our decisions & how to focus only on what you can control  Where to start when you feel you have no more to give; physically, emotionally or energetically    Grab your drink of choice and join the conversation!   Sponsor Visit locumstory.com today to learn more about locum tenens and see if it’s right for you: www.locumstory.com   Disclaimer The Healthcare Provider Happy Hour Podcast makes no warranty, guarantee, or representation as to the accuracy or sufficiency of the information featured in this Podcast. The information, opinions, and recommendations presented in this podcast are for general information only and any reliance on the information provided in this podcast is done at your own risk. This podcast should not be considered professional advice. Please speak with your own healthcare practitioner when seeking medical advice.   Resources Website & New Book Information: https://barrynicolaou.com/  Instagram: https://www.instagram.com/barrynicolaou/   Facebook: Barry Nicolaou  LinkedIn: https://www.linkedin.com/in/bnicolaou/      Connect with Jennifer George: @bestobsessed_with_jenn | Instagram Jennifer George | Website @jenngeorge08) | Twitter Jennifer George | Facebook Click here to check out my book about connecting and communicating with patients to empower their experiences! Stay up to date on everything happening with the Healthcare Provider Happy Hour by subscribing to my weekly newsletter at www.jennifergeorge.co
September 20, 2022
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Share Your Story: Joy Huber

Joy Huber is a stage 4 cancer survivor, speaker, author, blogger, and “Dose of Joy” podcast host. Joy endured three years of chemotherapy suffering complete hair loss in her 30s. During her cancer journey Joy realized, “While no one’s happy they have cancer, you can have cancer and still be happy.” 2:00: My diagnosis was in March of 2010. 04:32: I had noticed kinds of these lumps or bulges. 07:27: I need to set you up with the ear nose and throat specialist. 10:02: Even if you love your doctor, you should get a second opinion when it comes to cancer. 12:41: What's challenging is they'll needle through the skin. 14:56: It’s not uncommon for someone to get a port.  17:01: What were you doing for work at that time?  20:03: How many treatments you were supposed to have?  22:15: Lymphomas tend to recur relapse and come back.  24:07: I had to do chemotherapy and his funeral within 48 hours.  27:18: What was your best moment?  30:32: I'm 33, but all my hair is gone.  32:34: People have different reactions when they hear the word cancer.  33:16: What is the one thing you wish you had known at the very beginning of your cancer journey?  34:09: If you could only do one thing to improve healthcare in the U.S., what would it be and why? 36:19: Thriver Rapid Fire Questions.  39:32: Aside from Cancer U, what is one resource you would recommend for cancer patients and caregivers?  Resources Dose of Joy Facebook pageDose of Joy Podcast on SpotifyEmail Joy  
September 20, 2022
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The Patient Orator, with Kistein Monkhouse, MPA

A recent study showed that it takes a doctor 11 seconds to interrupt a patient. My guest today is Kistein Monkhouse, a public health expert and patient advocate advocating for health equity. She is the CEO and founder of Patient Orator, a HIPAA-compliant digital health mobile app that improves how people talk to doctors and how doctors talk to people. Kistein speaks softly but carries a big stick and, with her immigrant backstory, demonstrates the power of perseverance, empathy, and entrepreneurship to make a dent in the universe for the patient community. Please enjoy this extraordinarily authentic conversation.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 20, 2022
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IMPACTOVATION: When your profession’s pool won’t accommodate your splash, dig an ocean that will.

OVERVIEW/COURSE DESCRIPTION:  Do you have imposter syndrome? You know, when you think you don’t belong and you’re faking it? Well that’s great for it means you’re ready to buck the system. Meet Cassie Choi who was born an iconoclast. She entered nursing to make an impact and became a CEO and co-founder of a tech company in healthcare that focuses on the most important factor of healthcare: the relationship with the patient. Please join RNegade podcasters Antra and Karen as they learn about Cassie’s journey and the innovation and change she brings to the healthcare industry.  WHO SHOULD TAKE THIS COURSE: Nurses interested in becoming entrepreneurs. Nurses looking to become leaders at their institution or organization. Individuals interested in starting their own technology business for healthcare. COURSE OUTLINE:  I. Introductions/Get to know Cassie II. “The American healthcare system is too big and f***** up.” (Cassie’s experience as a nurse) A. Inequitable care B. Hospitals as pivotal roles in the community C. How do I empower people who don’t have basic access to healthcare? III. Stepping out of the box A. Learning to code B. Nurse as medical consultant for tech companies C. 1st Company: Forward D. 2nd Company: Pair Team How it all started Description of services provided Philosophy of technology and patient care It’s all about the relationship OBJECTIVES:  Upon completion of this course, participants will be able to: 1. become professionally self-reliant and start a business, side-hustle or gig 2. identify core skills to that are necessary for technology focused healthcare companies 3. reflect on their position in their workplace with regard to having imposter syndrome SOURCES: https://www.ncbi.nlm.nih.gov/books/NBK550959/ TO RECEIVE YOUR CE: Click on the Episode Website Link, or go to www.RNegade.pro, to become a registered user and answer the activity questions under the title of this podcast. Please submit your responses to the activities either by typing or recording an audio response using HIRETALK. Responses will be reviewed and if approved, you will be awarded your CE.  ACTIVITY QUESTIONS: Cassie’s experience at a prestigious New York hospital was an awakening for her that she was an imposter. Have you felt this way at work? Do you feel this way now? Please share in detail.   Cassie’s journey takes us on an adventure of startups and entrepreneurship all the while focusing on her core value of caring for others. Do you feel you could stop what you are doing now and take a similar step? Why or why not? Technology is great… when it works. What is an advancement in technology you would like to see that would help make a bigger impact in patient care? ABOUT THE INSTRUCTOR: Cassie Choi, RN, is the co-founder and COO of Pair Team, a San Francisco-based tech-enabled care team and operations infrastructure for America’s safety-net primary care clinics. Her experience in clinical design, operational management and product strategy fuel Pair Team’s vision and presence in digital health. She offers a unique blend of medical and business acumen and a passion for healthcare innovation. Cassie started her career in nursing as a critical care nurse in multiple acute care settings. It was there she saw gaps in American healthcare and was determined to find a solution. Cassie’s profession evolved into clinical operations and technology development. Her entrepreneurial spirit and passion for social and economic disparities led her to partner with former Forward colleague Neil Batlivala to co-found Pair Team in 2019.  She is a California Board of Nursing Registered Nurse and holds a bachelor’s degree in nursing from Northeastern University. ACCREDITATION STATEMENTS: RNegade is accredited as a provider of continuing education by the California Board of Registered Nursing TOTAL CONTACT HOURS:    1.0 (0.65 listen to podcast, 0.25 activity, 0.1 evaluation) EXPIRATION DATE: July 10, 2025
September 15, 2022
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A Rare Collection – Underestimated

ONCE UPON A GENE - EPISODE 152 A Rare Collection - Underestimated There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story with a common theme.  EPISODE HIGHLIGHTS Ryan Sheedy, Dad to Reynolds When I think about the word underestimate, I think about an underdog. As a kid my favorite movie was Rudy, the story of Daniel Ruettiger, a young man determined to play football for the University of Notre Dame. Rudy was too small, didn't have the grades to go to college and he was dyslexic. Now that I'm a dad, I love this movie even more because my son Reynolds is a real-life Rudy. He was diagnosed with an ultra rare disease called Costello Syndrome at 18 months old. Reynolds has spent 103 days in the hospital, has undergone countless surgeries, his medical team consists of 30 doctors and with an ultra rare disease, he is incredibly complex and medically fragile.  Reynolds never quits, he inspires many and reminds me to never underestimate the power of determination.  Stephen Hager, Dad to Emma When we were pregnant with our daughter, we underestimated how she would completely define who I was. When a neurologist explained her condition to us and said she would only live a few more months, we underestimated how resilient she would be. We underestimated the bureaucratic red tape we would encounter to get equipment and services. When we got services, we underestimated how draining it would be to take her to therapy five days a week. I underestimated how hard this life would be and how often I would need support. I also underestimated how readily people would offer support.  Christopher Andrade, Dad to Logan My wife Katie and I are raising three children. I always knew I wanted children, but underestimated how much I would love them. I love my children fiercely. Logan was diagnosed with Noonan Syndrome at a year old. Regardless of his condition, he was still my perfect son and nothing would change that. It was a struggle to get through the six months after Logan's diagnosis. I underestimated how painful it would be to be a parent. I remember the day the oncologist told us our son had cancer. I underestimated how painful it is to watch our children hurt and struggle, enduring things they shouldn't have to. It was brutally hard. When it came to his heart surgery, I underestimated what it would be like to see him after and the journey to recovery. When I started advocating online, I underestimated the toll it would take on me. CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
September 15, 2022
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Health Careless: Goodbye, Vax On!

What do cancer survivors, free speech and license plates have in common? A legal case happening in Delaware! Join Elura Nanos and Matthew Zachary as they dissect the latest healthcare news including: what’s happening with the CDC reorg, monkeypox and a story on a breast cancer survivor’s legal battle to make the Delaware DMV allow her “FCANCER” license plate on the road. Welcome to the first episode of Health Careless, formerly known as Vax On.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 15, 2022
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Share Your Story: Matt Ode

At the age of 24, Matt Ode was diagnosed with Stage 3C Testicular Cancer. By the age of 25, he was led into a 2-week coma with multiple near-death experiences having to relearn to live his life over again. Fast forward 5 years, Matt is now a keynote motivational speaker and coach helping individuals transform their setbacks into their superpowers. 02:22: We have what's called scan anxiety.  04:10: I had to get rushed into the emergency surgery. 07:30: They found out I had the highest stage of testicular cancer.  09:11: There are so many ways of doing chemotherapy. 11:35: Your tumor is wrapped around what's called your inferior vena cava.  13:18: I was in the hospital for an entire week.  15:18: After 53 days I couldn't eat anything. 17:27: I was in a coma. 19:15: We offered um 40 hours of personal training for free to all our employees.  21:23: What was your worst moment?  22:58: Why did you stop doing physical therapy?  25:33: How did you propose? 27:23: What's one thing you wish you had known at the very beginning?  29:57: Thriver Rapid Fire Questions.  31:05: Aside from Cancer U, what is one resource that you would recommend for cancer patients and caregivers?  Resources Matt's websiteMatt on FacebookMatt on LinkedInMatt on InstagramMatt on YouTubeTesticular Cancer Foundation  
September 13, 2022
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Detecting “Pre-cancer” Is the New Prevention with Dr. Lishan Aklog

Fran Drescher once said, "Stage 1 is the cure." Not any longer. Medical technology and genetics have come so far these days that it's now possible never to get cancer in the first place. At least some cancers that is. No, we're not talking about "prevention" in the traditional sense. My in-studio guest Dr. Lishan Aklog and I talk about "pre-cancer," a condition where cells in your body that are at risk of becoming cancer can now be detected and treated before any actual malignancy begins. How unbelievably insane is that? Lishan is an acclaimed thoracic surgeon and entrepreneur who once fled political violence in Ethiopia as a child and now helms PAVMed, a truly next-gen enterprise bringing to market these miraculous tests that can detect pre-cancer. Deservedly so, Lishan was recently named a Top 50 Healthcare/Technology CEO of 2021 and speaks to such essential issues as empathy in medicine, fighting with the FDA, and boiling down complex medical jargon so the average human can understand it. How novel. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 13, 2022
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Rare Friends Forever – Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson

ONCE UPON A GENE - EPISODE 151 Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson Adam "Dadvocate" Johnson and Katie Lloyd are on the podcast, joining me for a lighthearted chat about Brené Brown, a research professor who has spent the past two decades studying courage, vulnerability, shame, and empathy.  EPISODE HIGHLIGHTS Adam, what are some of your favorite quotes and why? One that stands out in terms of transitioning into the rare disease space is from Daring Greatly and says, "What we know matters, but who we are matters more." This was impactful to me because when rare disease happened and I was losing my career, transitioning into survival mode, I had to find myself again and remember that who I was mattered more.  Katie, can you share a quote that has impacted you? It's very scary to be vulnerable and it reminds me of the quote, "Tell the story of who you are with your whole heart." Last time I was on the podcast, I shared vulnerable thoughts and feelings and later worried about who would hear them. This quote reminds me that it's important to open up and share and that it helps others feel they're not alone. Brene talks a lot about shame and says, "Shame is the fear of disconnection." When we are vulnerable, especially talking about rare disease, we connect and we feel more open and less ashamed. LINKS & RESOURCES MENTIONED Episode 125 - A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure Katie Lloyd https://effieparks.com/podcast/episode-125-katie-lloyd Episode 052 - Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story https://effieparks.com/podcast/episode-052-adam-johnson-mitochondrial-myopathy Brené Brown, TEDxHouston: The power of vulnerability https://www.ted.com/talks/brene_brown_the_power_of_vulnerability Dare to Lead https://brenebrown.com/book/dare-to-lead/ Atlas of the Heart https://brenebrown.com/book/atlas-of-the-heart/ Brené Brown: Atlas Of The Heart on HBO Max https://www.hbomax.com/series/urn:hbo:series:GYivWaAXEZMLDwwEAAACz Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead https://www.amazon.com/Daring-Greatly-Courage-Vulnerable-Transforms/dp/1592408419 Parents As Rare Podcast https://rarediseasedad.com/parents-as-rare-my-pod A Very Rare Adventure Blog https://averyrareadventure.com/ The Imaginary Dad Podcast on YouTube https://www.youtube.com/channel/UCxSX6fMdpfcruG_Tt3JJ0TQ/featured TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Once Upon a Gene TV https://www.thedisordercollection.com/
September 8, 2022
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Doomsday Watch Meets Global Health (with Guest Arthur Snell)

Ben meets Arthur Snell, former UK diplomat, host of the Doomsday Watch Podcast, and author of the Amazon UK bestseller “How Britain Broke The World” to explore how the greatest challenges facing the international community are radically changing global health priorities. Arthur reflects on the wide-ranging impacts of Russia’s ill-fated invasion of Ukraine, NATO’s retreat from Afghanistan, and what to expect from the new British Prime Minister Liz Truss - particularly whether the UK will follow the lead of the US and European partners and support the 7th replenishment of the Global Fund.  https://www.ashotinthearmpodcast.com https://kite.link/doomsday https://kite.link/OhGodWhatNow https://kite.link/thebunker https://www.podmasters.co.uk https://www.canburypress.com/products/how-britain-broke-the-world-by-arthur-snell-isbn-9781912454600 #globalsecurity #Ukraine #globalhealthsecurity #pandemics #pandemicspreparation #pandemicsresponse #HIV #AIDS #malaria #tb #covid #LizTruss #GlobalFund
September 8, 2022
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Vax On: Vax Off

18 months, 72 episodes, countless Uncrustables references, and one global pandemic later, it’s time to retire the VAX ON segment and transform it into an even bigger segment on the Out of Patients podcast feed. There’s a whole world of opportunity outside of COVID fuckery waiting to be lauded, chastised, berated, heralded, castigated, and brazenly deconstructed. So join us as Matthew and Elura hop in the Wayback machine and reflect on how it all began, what they did to stay alive, and where we’ve landed across these pandemic years.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
September 8, 2022
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AlzAuthors Untangles A Collection of Stories to Support Your Caregiving Journey

The podcast you are about to listen to is a recording of an event we did with Kensington Senior Living in June, 2022. "On the Same Page this Summer: A Collection of Stories to Support You on Your Caregiving Journey" features four authors discussing their personal dementia experiences. You'll hear from a young woman whose mother was diagnosed with early onset Alzheimer's when she was just 25; a professional in dementia care with strategies to help you manage your own situation; a mom in the "sandwich generation" who shares how she balanced care between her school-age children and her parents with dementia; and a psychologist who has investigated and encountered "shared death experiences." This is an insightful, inspiring episode and you're sure to walk away with greater confidence and knowledge to guide your own dementia journey. Please join us for our next live event on September 13th at 2 pm eastern time when we discuss Dementia Care Around the World with three authors representing the United States, Canada, and Costa Rica. For more details, visit our website. Watch this panel presentation on YouTube After the Podcast Learn more about these authors: Christy Byrne Yates Christy Yates Helps Caregivers Raising Children Ease the Squeeze AlzAuthors and HFC Present Summer Book Series Podcast: Christy Byrne Yates, MS Untangles Dementia Care and the Sandwich Generation Lauren Dykovitz Millennial Caregiver Writes About Mom With Early Onset Alzheimer’s Lauren Dykovitz Shares Story of Mother’s Final Dementia Days Three AlzAuthors Featured in Chicken Soup for Soul Book Podcast:  Untangling Life as a Millennial Caregiver with Lauren Dykovitz Tammy Anastasia Tami Anastasia Comes Full Circle with the Dementia Journey William Peters SharedCrossing.com Note: We are an Amazon Associate and may receive a small commission from book sales. Visit Kensington Senior Living, a premier senior living operator and developer bringing the highest quality senior care to America’s most sought-after locations. *** About the Podcast AlzAuthors is the global community of authors writing about Alzheimer's and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please visit https://alzauthors.com/donate/ . Thank you for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Also on UK Health Radio and The NYC Podcast Network Want to be on the podcast? Here’s what you need to know. Thanks for listening.  AlzAuthors.com Shop our Store        
September 7, 2022
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Effisode – Inclusion Revolution

Intro music by Scott Holmes
September 6, 2022
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Treatment for Alzheimer’s Disease: Diet, Exercise and Lifestyle Changes Hear from people living with Alzheimer's about lifestyle changes they’ve adopted to continue leading active, social lives.