A Rare Collection – Easier Said Than Done
ONCE UPON A GENE - EPISODE 147
A Rare Collection - Easier Said Than Done
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
Katie Stevens, Executive Director of Team Telomere
It's back to school season which has me thinking about how the education system so often fails the most vulnerable children. In 2015, we moved from Idaho to Boston. My son was set to be the sixth patient in the world to undergo a clinical trial for people with Telomere Biology Disorders. We had been searching for the best treatment for my son for years. His body was no longer able to fight viruses and infections, he couldn't stop bleeding and he didn't have enough red blood cells to keep him from feeling easily winded. He was a 12 year old boy whose day-to-day was filled with worry and he just wanted to be "normal". Getting your child an education when critically ill or disabled is easier said than done. I'm thankful for the teachers that stood up for my child. Education for the most vulnerable children of our society shouldn't be dismissed.
Parvathy Krishnan, Foundation Alliance Manager at Global Genes
As a child I was always told nothing was impossible and everything would be okay if I saw the positive. I truly believed the ups and downs of life were part of the journey and I just had to see the positive. When I had my first child, I had my parenting journey mapped out and anticipated ups and downs. It was instead filled with potholes, car crashes and train wrecks. It was hard to see the positive when everything seemed bleak. Through our diagnostic odyssey, and through various aggressive treatments taking place concurrently for both of my children, it was hard to find the positive and I felt like I was failing. Hope was a mirage. I felt a medical breakthrough was the only positive that would give me closure. But I was wrong. A smile from my children was the positive I needed. While it's easier said than done to find the positive, even when it feels impossible, remember to turn on the light and hope that this too shall pass.
Becky Tilley, Koolen De Vries Syndrome
I'm a passionate writer and advocate. In all the articles and blogs I've written, you'll see the common sentiment to celebrate your uniqueness, be yourself, and enjoy being you. In real life, that's challenging to do. The symptoms of Koolen De Vries Syndrome that myself and my two youngest children share can vary from mild, to moderate, to severe. I grew up with learning disabilities. I was an easy target for bullies. I never learned what it was to love and celebrate what made me different and this is something I want for my children. I want them to be empowered in who they are. For them to do that, I need to be an example, especially as a mom that shares the same syndrome. I feel a responsibility to them to celebrate being unique and inspire my children to do the same.
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/
August 11, 2022
by Once Upon A Gene
A caregiver’s love story
"Dying and introspection happening at the same time were a dual reality that I found impossible to ignore when Bill was not doing well. As Bill’s poor prognosis and impending death began to reflect on our life, it was getting harder to respond to the living as we had in the past. Bill seemed to be pulling away from everyone he knew, except for a handful of friends and me. As a dying person, he seemed to be concentrating on only one thing – dying. The truth is that nature is selfish and dying is just part of the natural transition as someone ages. You can’t avoid it, and sometimes it can even sneak up on you." Nancie Wiseman Attwater is the author of A Caregiver's Love Story. She shares her story and discusses her KevinMD article, "Dying is a selfish business." Did you enjoy today’s episode? Rate and review the show so more audiences can find The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out. Click here to earn 1.0 AMA PRA Category 1 CME for this episode. Also available in Category 1 CME bundles. Powered by CMEfy - a seamless way for busy clinician learners to discover Internet Point-of-Care Learning opportunities that reward AMA PRA Category 1 Credit(s)™. Learn more at about.cmefy.com/cme-info
August 11, 2022
by The Podcast by KevinMD
The Health System View of DTx: Steve Driver shares Insights on his Experience as a Medical Director of Digital Therapeutics
In this episode we hear from Steve Driver, the Medical Director of Digital Therapeutics at one of the largest health systems in the US, Advocate Aurora Health. I have been itching to get a view from a health system perspective on this show since season one. As a practicing cardiologist, it is always great to hear from somebody who is practicing this in the front lines.
We cover:
The expectations of the role as a Medical Director of Digital Therapeutics for a large health system.
The level of evidence required for adoption in a health system
The future of the patient journey using DTx
DTx standalone versus drug+
The role of the pharmacists in dispensing digital therapeutics
Guest Links and Resources:
Connect with Steve Driver on LinkedIn | Twitter
Visit www.advocateaurorahealth.org/
Host Links:
Connect with Eugene Borukhovich: Twitter | LinkedIn
Connect with Chandana Fitzgerald, MD: Twitter | LinkedIn
Connect with YourCoach.health: Website | Twitter
Check out Shot of Digital Health with Eugene and Jim Joyce: Website | Podcast App
HealthXL: Website | Twitter | Join an Event
Season 2 of Digital Therapeutics Podcast would not be possible without the support of leading DTx organizations. Thank you to:
> Presenting Partner: Amalgam Rx
> Contributing Sponsors: Akili | Big Health | Click Therapeutics | Lindus Health
Follow Digital Health Today:
Browse Episodes | Twitter | LinkedIn | Facebook | Instagram
Follow Health Podcast Network:
Browse Shows | LinkedIn | Twitter | Facebook | Instagram
August 11, 2022
by DTx Podcast with Eugene Borukhovich
Health Care’s Climate Change Contradiction
The U.S. health care system is responsible for 8.5% of the country’s greenhouse gas emissions. We discuss how health care contributes to climate change, how some hospitals are trying to reduce their carbon footprint and what more needs to be done.Guest:Gary Cohen, co-founder and president of Health Care Without HarmRead a full transcript and dig deeper into the issues explored in today's episode on our website.Support this type of journalism today by making a donation.Sign up for our weekly newsletter to see what research health policy experts are reading right now.Follow us on Twitter. See acast.com/privacy for privacy and opt-out information.
August 11, 2022
by Tradeoffs
Episode 69: Rules & Regs: Navigating a Complex Regulatory Environment
Healthcare is one of the most regulated industries that exist today, and the maze of regulations continues to expand. Today, we zero in on how rural hospitals can deal with the growing complexity of the regulatory environment. Our guest this week is Martie Ross, Office Managing Principal at PYA, and Director of the Center for Rural Health Advancement.
August 11, 2022
by Rural Health Rising
![[BEST OF VAX ON] Vax On: COVID vs. The Animal Kingdom](https://content.production.cdn.art19.com/images/aa/e3/8a/83/aae38a83-6347-4d3d-9cd8-231dd5094273/479a1b78b16b515c023471a821f3d863193f38078f257bc7cf5cd0c8a5e2f69c2671908fa32e7cd4d3c59591bee2ccb4b9e75d6dc8f5b380796f5cb50cbd0e71.jpeg)
[BEST OF VAX ON] Vax On: COVID vs. The Animal Kingdom
Original Air Date 01/20/2022 — Find out why you shouldn't kiss your chinchillas.Visit offscrip.com/shows for more podcasts.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
August 11, 2022
by Out of Patients with Matthew Zachary
Shot of #DigitalHealth Therapy – Meri Beckwith – Lindus Health
On this Wednesday's #TheShot of #DigitalHealth Therapy Jim Joyce and I talked "plants, cells and spiders" with the awesome guest Meri Beckwith, Co-Founder of Lindus Health:
🪴 🕷 Academia Currency
🪴 🕷 How VC's really work 😂
🪴 🕷 EROOM law in Pharma
🪴 🕷 CRO Business model
🪴 🕷 What matters in #clinicaltrials
🪴 🕷 oh and.... team & talent!
Fun mentions as always: Lina Wenner Brent Hoberman firstminute capital Alex Zhavoronkov Christian Angermayer Paul Wicks Michael Pace Jonah Comstock
August 10, 2022
by Shot of Digital Health Therapy
Being a Universal Translator: The Tasks of a Nurse Informaticist with Amora Upton, Nurse Informaticist at The Department of Veteran Affairs
If they keep closing doors, go around them.
In this episode of the Future of Global Informatics, TJ Southern is happy to be joined by Amora Upton, an army veteran and nurse informaticist at the Department of Veteran Affairs. As an experienced professional, Amora shares her career trajectory from learning computer programs and informatics in the army to working on artificial intelligence policy issues. She talks about challenges and shortcomings she has experienced in her career, like inadequate software, the lack of more nurses on decision-making tables, level standardization, and hierarchies in nursing informatics. Amora also discusses the diversity of job opportunities for nurse informaticists and encourages newcomer professionals to have an open mind.
Tune in to listen to learn from Amora Upton’s experience and advice nurse informaticists!
Click this link to the show notes, transcript, and resources: outcomesrocket.health
August 10, 2022
by Outcomes Rocket
271 – LuminaX Health Accelerator Showcase #5 Kaitlyn Sapier – Eduvidd & Benson Riddle – Stitch
In this episode, you will learn more about using virtual reality to improve telehealth for both patients and clinicians, even without a VR headset. Also, this episode covers how one startup is working toward improving continued professional development so that nurses can conveniently and enjoyably expand their knowledge base to better care for patients.
August 10, 2022
by Talking HealthTech
NEJM This Week — August 11, 2022
Featuring articles on redirecting T cells against myeloma cells, the removal of small kidney stones and relapse, the treatment of severe alpha1-antitrypsin deficiency, and BNT162b2 protection against omicron in children; a review article on bronchiectasis; a case report of a man with perianal and penile ulcers, pain, and rash; and Perspective articles on race and ethnicity in Covid risk assessments, on understanding Covid vaccine efficacy over time, on noncompete agreements, on bringing sickle-cell treatments to sub-Saharan Africa, and on a critical shortage of iodinated contrast material. Supplement to the New England Journal of Medicine, Vol. 387, No. 6.
August 10, 2022
by NEJM This Week – Audio Summaries
The Mission of the American Medical Student Association (AMSA) with Dr. Michael Walls
Michael Walls, DO, MPH, is the current National President of the American Medical Student Association (AMSA) and has been with the organization since he first joined as a member in 2014.
In this episode of SoundPractice, Mike Sacopulos and Dr. Walls discuss the rich history and mission of AMSA – and how the organization works to prepare, train, and embolden medical students to become leaders. With over 30,000 members worldwide, the association’s ongoing initiatives include advocacy for providing equitable lowering drug prices, equitable access to healthcare for all, understanding how environmental and social determinants of health impact health and the timely and paramount issue of reproductive rights.
Dr. Walls also discusses the medical education scorecard initiative, which fills gaps that often exist in medical school training. And what should medical school training look like in future? Dr. Walls and Mike Sacopulos cover that topic as well.
https://www.amsa.org/
Learn more about the American Association for Physician Leadership at www.physicianleaders.org
August 10, 2022
by SoundPractice Podcast
The Precision Longevity Series Part 1
From the minute of our birth to the moment of our deaths, aging is the most reliable process of living and there has never been a better time to age! In this episode of HOT for your Health, Dr Vonda Wright shares her approach to extending your healthspan and in doing so your lifespan via the Precision Longevity Experience, a program series she curated to harness the new science of aging to prevent or minimize life-ending events and extend your healthy, high performing lifespan. Listen as Dr Wright shares her passion for healthy living across all ages and think through her molecular, precision lifestyle and mindset mobilization approaches for making the rest of your life, the best of your life. To learn more about The Precision Longevity Experience connect with Dr Wright via www.drvondawright.com
August 10, 2022
by HOT for your Health
E111: Ruth Hartt – An Opera Singer Walks Into a Think Tank and Meets a Theory
Ben & Jay dig again into Jobs to Be Done, this time from a fascinating perspective with Ruth Hartt, Chief of Staff to the President at the Christensen Institute and creator of Culture for Hire. Ruth, a former opera singer and vocal teacher, is passionate about bringing customer-centric innovation to arts marketing. Classical music audiences have declined nearly 50% since 1997. Hear how Ruth applies Jobs to Be Done theory to help arts organizations reverse this trend and expand their notion of their audience and how reach them. The Art of Relevance by Nina SimonAll Things Twitter:Ruth HarttA Sherpa's Guide to InnovationBen TingeyJay GerhartSupport the show
August 10, 2022
by A Sherpa’s Guide to Innovation
5 Ways to Be Happy While Building Your Practice with Sabrina Runbeck Ep 11
In this podcast episode, I revealed how healthcare providers can find joy in their work by leveraging technology, delegating tasks, and staying focused.
In this video, you will learn:
1. How to stay productive and not get overwhelmed
2. The importance of having a clear purpose
3. Keep your commitment and feel good when saying "NO"
4. Celebrate the small wins
5. The benefits of auditing
Resources:
Allow yourself to have a 2-minutes Mini Mental Vacation so you can bring back peace, focus, and energy. Try it now: SabrinaRunbeck.com/Energy
Connect with me:
Want to have a conversation to see if I might be able to support your performance and productivity so you can optimize your practice, your life, and your future? Grab a call now: SabrinaRunbeck.com/Work-Me-Me
Loved this episode? Leave us a review and rating here: SabrinaRunbeck.com/Apple-Podcast
August 10, 2022
by The Provider’s Edge
A physician’s work dread and what he did about it
"Work dread. Even if you didn’t know it had a name, you know the feeling. It is that sensation in the pit of your stomach when you realize that the start of your workday or workweek is fast approaching, and you don’t want it to come. Sometimes it begins on Sunday afternoon when you want to be enjoying time with your family. Other times, you might find yourself sitting in the hospital or clinic parking lot, resisting the beginning of another busy day. Maybe you sit in your car for an extra 10 minutes and allow yourself to finish a podcast episode. Or perhaps you doomscroll on Facebook for a few minutes before taking a deep breath, getting out of your car, and starting your day." Michael Hersh is a gastroenterologist. He shares his story and discusses his KevinMD article, "The epidemic of work dread." Did you enjoy today’s episode? Rate and review the show so more audiences can find The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out. Click here to earn 1.0 AMA PRA Category 1 CME for this episode. Also available in Category 1 CME bundles. Powered by CMEfy - a seamless way for busy clinician learners to discover Internet Point-of-Care Learning opportunities that reward AMA PRA Category 1 Credit(s)™. Learn more at about.cmefy.com/cme-info
August 10, 2022
by The Podcast by KevinMD
The Virtual Clinical Podcast : Health Equity and Scholarship Opportunity
We join Geoffrey Roche, current Senior Vice President of Workforce Development at Dignity Health Global Education to learn all about his vast career and current opportunities for nurses to receive scholarship to advance their careers! Geoffrey is a non-nurse with VAST experience in public and government affairs, political determinants of health and strategic services. Geoffrey is very passionate and excited to bring Dignity Health Global Education to the forefront of health professionals who seek advancements by degree or certification with the advantage of scholarship bringing cost significantly down!
Learn more here: https://dhge.org/
Check out more of The Virtual Clinical Podcast here: https://www.thevirtualclinicalpodcast.com/
-| The Health Equity Podcast Channel is made possible with support from Bayer G4A. Learn more about how Bayer G4A is advancing equity, access and sustainability at G4a.health
-| This episode originally aired on January 31, 2022 on The Virtual Clinical Podcast. Listen, follow and subscribe here.
August 10, 2022
by Health Equity Podcast Channel
#161: The Importance of Polarity Intelligence™ Awareness for Healthcare Leaders
In this episode, we talk about the importance of Polarity Intelligence™ Awareness for healthcare leaders and why it’s essential to leverage them.
We know Polarity Intelligence™ is an essential competency for healthcare leaders. Therefore, it’s important to recognize polarities and differentiate them from problems.
The thing is, you can’t address and manage a polarity if you don’t know it exists or if you treat it as a problem to solve.
In this podcast, we talk about four levels of Polarity Intelligence Awareness and some of the consequences that occur if you are not consciously aware of your present polarities.
We also talk about the importance of differentiating between problems and polarities, and some reflection questions about identifying your level of competency so you can take action to increase your Polarity Intelligence.
For full show notes and links, visit:
https://www.missinglogic.com/new-podcast
If you found value in this episode, please subscribe and leave us a review on Apple Podcasts!
Future Event:
Virtual Leadership Survival Bootcamp, September 26 - 30, 2022
The Virtual Leadership Survival Bootcamp is a virtual Bootcamp designed for healthcare leaders like you to learn about and apply a proven strategy that will get you through the next six months or more. Learn to create balance between your professional and personal life, make a difference at work, and experience more joy, without feeling exhausted and overwhelmed.
Click here to join the waitlist and be the first to know when the doors are open!
SOCIAL MEDIA LINKS:
https://www.linkedin.com/company/missinglogic-llc
https://www.facebook.com/missinglogicLLC
https://twitter.com/MissingLogicLLC
https://www.instagram.com/missinglogic_llc/
August 10, 2022
by Healthcare’s MissingLogic Podcast
Patti Callahan Henry Untangles What it Means to Remember
What are memories? Do our memories make us who we are? What happens to “us” when our memory fails, and cognitive decline ensues? I discussed these profound questions with one of my favorite authors, Patti Callahan Henry. She is a New York Times and USA Today bestselling author of sixteen novels, a podcast host, and a co-creator and host of the popular show, Friends & Fiction. Prior to becoming an author, she was a Pediatric Clinical Nurse Specialist with a fascination for memory and focused on neurology and brain trauma. Her novel, The Favorite Daughter, joined our collection of carefully vetted books in November 2019.
“Memory,” she says, “haunts all my work but takes center stage in this one. Who do we become without those memories?”
Patti is the recipient of The Christy Award 2019 Winner “Book of the Year”; The Harper Lee Distinguished Writer of the Year for 2020, and the Alabama Library Association Book of the Year for 2019. She is also a contributor to the monthly life lesson essay column for Parade Magazine. A full-time author and mother of three, she now resides in both Mountain Brook, Alabama, and Bluffton, South Carolina with her husband.
In this podcast, we explore how our memories define us, if they do, the landscape of memory, and the concept of “ambiguous loss.”
After the Podcast
Read Patti’s AlzAuthors post: Memory is at the Heart of Patti Callahan Henry’s The Favorite Daughter
Purchase The Favorite Daughter on Amazon. https://amzn.to/2D9TDnQ
Note: We are an Amazon Associate and may receive a small commission from book sales.
Connect with Patti
Website
Facebook
Instagram
Twitter
Watch Friends & Fiction on Wednesdays at 7 pm, EST
***
About the Podcast
Each season our podcast brings you six of our authors sharing their dementia journeys. 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 donate here.
We are a WCN Featured Podcast.
Proud to be on The Health Podcast Network.
Want to be on the podcast? Here’s what you need to know.
Thanks for listening.
AlzAuthors.com
Shop our Store
August 9, 2022
by Untangling Alzheimer’s & Dementia, an AlzAuthors Podcast
Former Dexcom Exec Claudia Graham Joins StartUp Health’s New T1D Moonshot Impact Board
"The more you know, the better you’ll do living with diabetes," says Claudia Graham. "There's nothing more important in diabetes than empowering patients."
If you follow StartUp Health at all, you have seen headlines about our new Type 1 Diabetes Moonshot. To recap, we’ve launched an initiative designed to speed up innovation around Type 1 diabetes by bringing together a cross-disciplinary team of investors, entrepreneurs, philanthropists, researchers, and other industry experts. At the heart of the effort is an Impact Board – basically our T1D dream team – which brings together the top minds in the field for collaborative working sessions. We wanted to take some time on this podcast to introduce you to some of the inspiring folks on this Impact Board and invite you to get involved in the effort.
On this episode you’ll meet Claudia Graham, former executive at Dexcom, the company that revolutionized the continuous glucose monitor. She served as VP of Marketing and SVP of Global Access. Now she’s putting her decades of experience at Dexcom – and as someone living with Type 1 diabetes – to work as an advisor and investor. We caught up with Claudia over zoom at her home in Idaho to learn about the opportunities and challenges she sees in the Type 1 Diabetes Moonshot, how StartUp Health helps get away from institutional thinking to break down barriers and empower patients, and how she thinks about leaving a legacy for the next generation.
Entrepreneurs, are you working on a T1D solution? We want to hear from you.
Investors, want to back an impact-driven fund laser focused on T1D? Contact us.
Want more content like this? You can subscribe to the podcast as well as other health innovation updates at startuphealth.com/content.
Sign up for StartUp Health Insider™ to get funding insights, news, and special updates delivered to your inbox.
August 9, 2022
by StartUp Health NOW Podcast
SONSIEL: A Nurse Turned to Tech with Joshua Littlejohn, Product Manager of Nurse Experience at IntelyCare
A nurse is always building things that allow better care for patients! This episode features a nurse who has pivoted into technology and now helps build the tools that others use!
This week’s guest on the SONSIEL Podcast is Joshua Littlejohn, product manager for the clinician experience at IntelyCare. After working in molecular microbiology and making television, Joshua became a nurse who then turned to technology, inspired to structure the tools and the systems to care for people. He introduces IntelyCare, a platform where individual nurses go and select which facilities, schedules, and shifts they want to work. He talks about his job as a product manager and draws differences and similarities with that of a nurse informaticist, both technology-filled jobs. The former being industry-focused, and the latter health-system-focused. Joshua speaks of finding where he fits in the nursing world and feeling excited about big data innovation in healthcare.
Tune in to this episode to listen to Joshua talk about technology making an innovative impact in care and nursing!
Click this link to the show notes, transcript, and resources: outcomesrocket.health
August 9, 2022
by Outcomes Rocket
EP. 96 Competence was a given. Confidence took a thoughtful plan.
Laurie McGraw is speaking with Inspiring Woman Wylecia Wiggs Harris, PhD, the CEO of the American Health Information Management Association (AHIMA). Dr. Harris describes her journey to leadership as one ...
August 9, 2022
by Inspiring Women with Laurie McGraw
Treatment of Intracranial Stenosis and Stroke, Stroke Incidence in Younger vs Older Age, Vein Graft Failure After Coronary Artery Bypass Graft Surgery, and more
Editor's Summary by Mary McDermott, MD, Deputy Editor of JAMA, the Journal of the American Medical Association, for the August 9, 2022 issue.
August 9, 2022
by JAMA Editor’s Summary
Next
Showing 1 - 24 of 12907
