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A Rare Collection – Rare Disease Storytelling with Kyle Bryant, Jennifer Siedman, Liz Morris and Ashley Fortney Point

ONCE UPON A GENE - EPISODE 100 A Rare Collection- Because of You with Kyle Bryant, Jennifer Siedman, Liz Morris, and Ashley Fortney Point 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. Kyle Bryant, Jennifer Sideman, Liz Morris, and Ashley Fortney Point share stories of rare disease. EPISODE HIGHLIGHTS Kyle Bryant, Living with Friedreich’s Ataxia Kyle was diagnosed with Friedreich’s Ataxia at age 17. It's a disease that affects balance and coordination and has symptoms of scoliosis, vision loss, hearing loss and life-shortening heart complications. At the time he was diagnosed, he ignored that his future would be much different than what he'd imagined. After a few years, he wanted to take a cross-country bike ride. Kyle reads a page from his book about how he convinced his parents to join him. Jennifer Siedman, Mother to Ben Jennifer loved a little boy with a rare disease called Sanfilippo Syndrome. That boy graced this Earth for 17 years with a big lion roar of a laugh and a gentle heart. He loved farms, tractors, baseball and chocolate donuts. His quiet determination convinced a researcher to pursue a treatment and because of it, there are other children today with Sanfilippo Syndrome who's future might look different than his. Jennifer knows who she is today because she was Ben's mother. Jennifer shares a story of her mother-in-law who, through her own determination, modeled the skills she would need to be the best mother and advocate she could be to Ben.  Liz Morris, Mother to Colson The Pacific Northwest is abundantly beautiful. Seattle's true appeal is in it's wild spaces. Carkeek Park in northern Seattle is one of Liz's favorites with organic healing powers she needs. Trails lead through the lush woods, there's an expansive shoreline with built-in driftwood seating and open green hills overlooking the sea and mountains. Liz and her husband sat on the beach at Carkeek Park on a hazy August evening in 2016 and talked of their future. They talked of the future they wanted for their future child, which Liz was six months pregnant with. Colson was born in October 2016. He was impacted by mitochondrial disease, a genetic disorder that compromised his body's ability to turn food into energy. Liz shares a story of living with enough. Ashley Fortney, Mother to Davis In 2014, Ashley welcomed her son Davis into the world after a difficult pregnancy filled with many hospitalizations and much worry. From the start, the doctors thought there might be something different about Davis. Davis was diagnosed with Koolen-de Vries syndrome at age 7, but he's continued to grow, learn and prove that nothing can stop him. Ashley shares all the ways that Davis has helped the family grow and find support from others in the community and all the ways he makes the world a better place. 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/
September 16, 2021
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27: Affordability: The Challenge of the Decade, featuring Mark Miller, Ph.D., Marty Makary, M.D., Nancy-Ann DeParle, Seema Verma, Elder Granger, M.D., MG, USA, (RET.)

In this special mash-up episode, we speak with various leaders across the board of healthcare to examine the challenge of affordability and some potential solutions.
September 16, 2021
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Employers Grapple With Fear, Uncertainty and Vaccine Mandates

As President Biden ups the pressure on businesses to mandate COVID-19 vaccines for their employees, we talk with a preschool owner wrestling with the decision and a researcher with tips on how to make a mandate work.Guests:Lesia Daniel-Hollingshead, Co-owner, Funtime ClintonAshley Ritter, APRN, PhD; Director of Clinical Care Research, NewCourtland; Adjunct Assistant Professor, NewCourtland Center for Transitions in Health, University of Pennsylvania School of Nursing; CEO, Dear PandemicFind additional resources and reporting on vaccine mandates and read a full transcript of this episode on our website: https://tradeoffs.org/2021/09/16/employers-grapple-with-fear-uncertainty-and-vaccine-mandates/ Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
September 16, 2021
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Episode 6: Expert Advice (and Tips) for Returning to School and Work Amid Continued COVID-19 Pandemic

Many families and communities still have questions about what a return to work and school will look like this fall, and how they can help their kids and aging parents navigate the transition. Two experts join the show to discuss—Dr. Debbie Gross, a child psychiatric nurse, and Dr. Valerie Cotter, an expert in aging, dementia, and palliative care. Podcast References What to do when you worry too much: A Kid’s Guide to Overcoming Anxiety What to Do When Your Temper Flares: A Kid’s Guide to Overcoming Problems With Anger COVID-19 Risks and Vaccine Information for Older Adults National Association of Area Agencies on Aging Maryland Department of Health Continue the Conversation @JHUNursing @ValCottervt Deborah Gross
September 15, 2021
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Embracing an Open-Mind For Success with Sepi Browning

Sepi is a Healthcare Management Professional with 30+ years of successful leadership in a variety of roles, with 16 of those years in healthcare information technology.  Her in-depth experience offers operational, project, and change management leadership within a healthcare environment spanning the entire Revenue Cycle workflow in both an inpatient and outpatient setting.    She is very effective in the full life cycle of project management while maintaining an understanding of the operational needs of the areas the project is impacting.  Her expertise range from implementing numerous health delivery projects focused on clinical, revenue, and technical arenas, involving system selection, procurement, workflow analysis, workflow documentation, and workflow process improvement, configuration and development, testing, reporting, training, activation, launch, and production support, and creation of policy and procedures for daily operations. She is a proven team facilitator and effective team member with a personal mission to effectively support her users in prioritizing all the Information Technology needs and manage an operational roadmap with an effective governance process. Here in Episode #135 Sepi starts our show with a leadership mindset encouraging us to be open to new opportunities. As a recent HIMSS Global Chapter Leader of the Year, Sepi shares how she's managed a 30+ year career in the healthcare industry; and introduces us to a number of specialized areas of healthcare IT professional certifications. Sepi gives us a dark moment story on how personal intimidation guided her into her career path. Sepi shares how she leverages honesty, support, and humor for bringing teams together. She shares a career aha moment, continuing in the theme of being open to new opportunities. As an IT professional Sepi gives an official nod to Emergency Management as an area of focus that she would love to see project management and quality professional’s plugin more with. Sepi highlights a growing collaborative locally in Georgia known as the Innovation Crescent. And she shares how building a personal brand centered on being reliable will go far with both current and future teams. · Connect with Sepi on LinkedIn · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
September 14, 2021
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Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care – Donovan Quill

ONCE UPON A GENE - EPISODE 099 Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill Donovan Quill has made it his personal mission to help patients who suffer from an orphan disorder that has affected his entire family, Alpha-1 Antitrypsin Deficiency. His advocacy efforts have led to his role as the CEO and President of Optime Care, a nationally recognized pharmacy, distribution and patient management organization. Donovan is also the host of the Rare Voices podcast.  EPISODE HIGHLIGHTS Can you tell us about the Alpha-1 Antitrypsin Deficiency? Alpha-1 Antitrypsin Deficiency is a genetic disorder where the body doesn't make a protein that protects your lungs or liver from deterioration. Most of my family suffers from the lung effects of the disease, but my father had both the lung and liver related effects of the disease and passed away from liver failure. Most of my aunts and uncles passed away in their 40's from lung and liver components of Alpha-1 and my father passed away at 69 because of his treatment and the care model he managed and lived. What was the defining moment that shaped how you run Optime Care? My father had a bright light about him, was education focused and always wanting to learn and that rubbed off on me, learning as much as possible about the patients we serve and the disorders we work with. My parents instilled traits in me to do the right thing, make sure people are cared for, and treat everyone with respect. Diagnosis day is something my family experienced several times and it helps me to think about how patients react to and experience diagnosis and all that they go through. What rare patients go through on a daily basis has shaped what we are as a company, how we develop care plans and treat patients. What is the most meaningful thing that has happened since starting your company? I say the greatest metric we have is the relationships with our patients and the success of the company. The individuals who support the mission get letters from patients, invites to personal events like birthdays, holiday dinners and celebratory milestones. Patients stop in to see us when they're traveling in the area to meet their care coordinators and pharmacists. That's what has been the most rewarding for me, seeing the impact the care coordinators, pharmacists and nurses have on patients. It's a special, magical experience. Can you talk about the Rare Voices Podcast? Everyone has a voice and to really understand the rare disease world, you have to look at the patient perspective and also understand there's a lot that goes into bringing a drug to market, getting a drug covered or building a care program. So many people become their own advocates and push to bring about change in the world of rare disease, so we've found people to tell their story on the podcast. People aren't running away from their story, they're not hiding their story- they want to tell it and there's a mission behind it. The more we can get people to tell their story, the more awareness we can get around disorders and diseases that affect only a small number of patients. We want people to be aware of rare diseases that need more attention so we can get research, development and resources for finding treatments and cures. RESOURCES MENTIONED Once Upon a Gene on Clubhouse https://www.joinclubhouse.com/club/once-upon-a-gene Optime Care https://www.optimecare.com/ Donovan Quill Linkedin https://www.linkedin.com/in/donovan-quill-428a9211 Rare Voices Podcast https://www.optimecare.com/rare-voices/
September 9, 2021
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26: Experience Across the Board, with Mindy Mount, Board Member and Advisor

Meet Mindy Mount:Mindy Mount currently serves on a variety of boards of directors including Cerner Corporation, Technicolor, The Learning Care Group, Group 9 Acquisition Corp., and Zayo. She has experience in public, private, and non-profit governance. She has a diverse background in finance and technology, having worked for Microsoft, Time Warner, and on Wall Street. She received an MBA from Harvard, and has a degree in Actuarial Sciences from the University of Wisconsin-Madison.Key Insights:Mindy Mount started her career with a strong analytical background. She has a passion for business and making businesses better. This led to her ample experience in governance. Qualities of a Good Board Member. Mindy describes the qualities that make good board members, including expertise, courage, and listening. (27:20) Management vs Governance. It’s easy to be a board member when things are going well, the line between management and governance may become blurred during a crisis. (33:24)Difficult Decisions. The most difficult, and often most emotional, decisions are around people. (45:50)Pathway to the Boardroom. Mindy discusses how professionals can gain the knowledge they need to become board members. (47:34)
September 9, 2021
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The Next Big Challenge to Abortion Rights

The Supreme Court just declined to block a controversial abortion ban in Texas. Now an even bigger case looms on their docket, and it could dramatically alter abortion access across the U.S.Guests:Laurie Sobel, JD, Associate Director, Women’s Health Policy, Kaiser Family FoundationAlina Salganicoff, PhD, Senior Vice President and Director of Women’s Health Policy, Kaiser Family FoundationThere's more about these two laws and the imminent SCOTUS case on our website: https://tradeoffs.org/2021/09/09/the-next-big-challenge-to-abortion-rights/Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
September 9, 2021
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Effisode – Ford Goes to Kindergarten

Intro music by Scott Holmes
September 7, 2021
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Leading the Path to ZERO Preventable Harm with Donna M. Prosser, DNP

Dr. Donna Prosser has been in the healthcare industry for more than 30 years and is currently the Chief Clinical Officer at the Patient Safety Movement Foundation. She spent the first fifteen years of her career at the bedside and transitioned into administration in 2002 after a personal experience that helped her to understand just how fragmented and unsafe patient care can be. This experience ignited a passion to improve healthcare quality and safety that continues to burn to this day. Prior to joining the Patient Safety Movement Foundation, Dr. Prosser worked as a healthcare consultant, helping organizations across the United States to improve quality and safety, increase patient engagement, and reduce clinician burnout. Before beginning her consulting career, she was responsible for clinical practice improvement across Martin Health System, while also functioning as Site Administrator and Chief Nursing Officer for the system’s largest hospital. She previously focused on improving quality and safety through administrative, education, and clinical roles at both Carteret Health Care and the Washington Hospital Center. Dr. Prosser is a Fellow in the American College of Healthcare Executives and is board certified as a Nurse Executive by the American Nurses Credentialing Center and as a Patient Advocate by the Patient Advocate Certification Board. She is the recipient of the 2021 Robert L. Wears Patient Safety Leadership Award. Here in Episode #134, Donna starts our show with a mindset encouraging even the smallest of groups to change the world. Working with the patient safety movement, Donna is on an impressive mission to achieve zero preventable harm by the year 2030. She shares with us her impressive background in nursing, leadership; and the very personal story that set her off on her journey to transform the industry. She highlights opportunities to improve the medical record for patients as a career lesson learned from her past. Donna shares of focus around human factors as an important tip for all facilitators to grow within. She provides great insights into the work that the Patient Safety Movement is leading, including access to the free virtual sessions for World Patient Safety Day. She gives a career Aha moment that encourages us to speak the language of the teams that we support. Donna connects the dots between problem-solving and the scientific method. Donna tells us why now is the perfect time for a quality and patient safety professionals to shine; and places a call to action for healthcare organizations to embed quality and patient safety in all areas of their organization. · Connect with Donna on LinkedIn · Learn More About Patient Safety Movement · Learn More About World Patient Safety Day · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
September 7, 2021
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Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO – Ethan Perlstein

ONCE UPON A GENE - EPISODE 098 Five Common Errors Made by Recently Diagnosed, Emotionally Overwhelmed Families Without Monetary Resources or Connections with Perlara Founder and CEO - Ethan Perlstein Ethan Perlstein is Founder of Perlara and on Clubhouse every Tuesday and Thursday in the Gene Fixers Club.  EPISODE HIGHLIGHTS What inspired your work as an entrepreneurial scientist at Perlara? It started at a professional crossroads when my sister received a rare disease diagnosis and it opened my eyes to the rare disease world. With a new personal connection to rare disease, having heard from patient groups on Twitter and being a professional crossroad, Perlara was born.  Talk about the relaunch of Perlara 2.0. Originally Perlara 1.0 set out to be the first biotech public benefit company (PBC) with a patient-centered model, finding families and foundations to be drug co-developers. Perlara 2.0 revolves around cure sherpas and guided cures. Guided cures is the process of finding medicines for ultra-rare disease with cure sherpas- scientists who devote time to a family or foundation on their rare disease journey. At Perlara, we are acting as a marketplace to match up cure sherpas with families and foundations that need a guided cure.  How can patient groups create a self-sustaining financial model? Crypto technology is being applied in the world of financing and there's over a trillion dollars of value sitting in crypto assets, mostly bitcoin. This could be put to work through communities staking liquidity pools and putting crypto to work. Communities could also issue coins in stock as a way to fund raise. Small communities can find creative ways to bypass traditional funding gatekeepers and access potential market value and put it to work. Pioneers are needed to explore crypto enabled crowd-funding. Taxes and pharma profits are another way to raise funds. Funding follows the plan, not the other way around. What do you mean by that? With a focus on a deliverable, project, tangible goal- something to fundraise around with a crowd-funding campaign. It's great energy, but the challenge is when you've spent the funds and didn't get the desired outcome. The temptation in the beginning is to take any action, but energy should be thrown into more than one project and have a bigger plan so you can fundraise for contingencies and access additional funding partners. Where should parents seek out resources to begin fundraising and building a plan? Perlara, along with other organizations, offers resources to start. The first resource should be the scientist who has dedicated their career to the gene responsible for the rare disease. Identify who the scientists are in the beginning and make those connections. RESOURCES MENTIONED Once Upon a Gene on Clubhouse https://www.joinclubhouse.com/club/once-upon-a-gene Gene Fixers Club  https://www.joinclubhouse.com/club/thegenefixers Perlara https://www.perlara.com/ Ethan Perlstein on Twitter https://twitter.com/eperlste 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 on Clubhouse https://www.joinclubhouse.com/club/once-upon-a-gene
September 2, 2021
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25: Administrator of Change with Seema Verma, Former Administrator, Center for Medicare and Medicaid Services (CMS)

In this episode, we sit down with Seema Verma, a former administrator of the Center for Medicare and Medicaid Services (CMS). The conversation explores implementing the free market in healthcare, Medicare Advantage, fee for service, and more.
September 2, 2021
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Schools Brace For Pandemic-Fueled Mental Health Needs

Kids are returning to in-person school this fall with increased rates of depression, anxiety and other pandemic-fueled mental health challenges, and schools are leaning on billions in new federal funding to meet the growing need.Guests:Kyron Harvell, Principal, Vivian Riddle Elementary School; Lansing, MichiganSharon Hoover, PhD, Co-Director, National Center for School Mental Health, University of Maryland School of MedicineLearn more about the research behind youth and school mental health on our website: https://tradeoffs.org/2021/09/02/schools-brace-for-pandemic-fueled-mental-health-needs/Read a transcript of this episode: https://tradeoffs.org/2021/09/02/schools-brace-for-pandemic-fueled-mental-health-needs-transcript/Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
September 2, 2021
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Becoming the Change with John Toussaint, MD

John Toussaint, MD, is the CEO emeritus of ThedaCare, a five-hospital system in Wisconsin, and the CEO of the ThedaCare Center for Healthcare Value. He was founding Chair of the Wisconsin Collaborative for Healthcare Quality and of the Wisconsin Health Information Organization, as well as the non-executive leader of the Partnership for Healthcare Payment Reform in Wisconsin. He has participated in many Institute of Medicine subcommittees, including most recently the Value Incentives Learning Collaborative and the CEO Checklist for High-Value Healthcare. Dr. Toussaint's healthcare improvement work using Toyota Production System principles has been well documented in articles published in Health Affairs, the Harvard Business Review Blog, and Frontiers in Health Management. His work on payment reform and the transparency of provider performance data has been featured in The American Journal of Managed Care and the Commonwealth Fund publications, as well as news publications like The Wall Street Journal, the Milwaukee Journal Sentinel, and Healthcare Finance News. He has been a featured speaker at the Association for Manufacturing Excellence, The Agency for Healthcare Research and Quality, the Center for Medicare and Medicaid Services, The Shingo Prize, The Lean Enterprise Institute, the Institute for Healthcare Improvement, and many international conferences. His groundbreaking first book, On the Mend, Revolutionizing Healthcare to Save Lives and Transform the Industry, was recently awarded the 2012 Shingo Research and Publication award. It shows how healthcare can be fundamentally improved at the point of delivery to patients using the proven principles of lean management. His just-released second book, Potent Medicine, The Collaborative Cure for Healthcare, describes the three core elements necessary to transform healthcare and deliver better value: delivery of care designed around the patient; transparency of treatment quality and cost; and payment for outcomes. Presently Dr. Toussaint is the leader of the Healthcare Value Leaders Network (www.healthcarevalueleaders.org). A partnership between the Lean Enterprise Institute in Cambridge Massachusetts and the ThedaCare Center for Healthcare Value. This partnership is helping to facilitate collaborative learning between organizations committed to transforming themselves using the lean methodology. Presently there are 27 members in the network. Here in Episode #133, John starts our show with a leadership mindset to act our way towards a new state of improvement. John gives us an overview of his career path, and what drove him to establish lean management principles as his guiding standard. He lays out the blueprint for leaders to establish management principles early for success and shares the dark moments story connected to the direct impact of failed leadership. John gives us great examples of leaders stepping up with courage and applying the fundamental principle of respect for people. He describes how he leverages the power of listening to build strong teams. He highlights his best practice approach for going to the Gemba with purpose, and how that led to a $4 million renovation project. John shares how appropriate payment programs will lead to an explosion of healthcare quality improvement. He encourages healthcare leaders to prioritize collaboration over the competition; and how healthcare leaders can create their best selves through reflection and personal Kaizen. • Connect with John’s on LinkedIn • The Lens - Podcast • Access the Healthcare QualityCast LinkedIn Group • Leaves Us a Rating --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
August 31, 2021
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A Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom – Carole Bakhos

ONCE UPON A GENE - EPISODE 097 A Mother's Story of Finding Your People, Accepting a Diagnosis and Loving Her Kid for Exactly Who She is with Jordan's Guardian Angels Mom - Carole Bakhos Carole Bakhos' eight year old daughter Yara was diagnosed with Jordan's Syndrome five years ago. She shares how being Yara's mom has been an enabling journey of love, fear, joy and hope. Carol is the Project Manager for Jordan's Guardian Angels.  EPISODE HIGHLIGHTS Can you tell us about your family? We started on the rare disease journey when my daughter was two years old, diagnosed with a rare disease in the gene PPP2R5D, now known as Jordan's Syndrome. At the time, there were six children in the world who were known to have the disease, so we weren't given a lot of information. Our journey started as one of fear of the unknown and isolation. The diagnosis wasn't the end of our journey, but the start of a world of self-educating, learning and connecting. Now we have a global family that understand our experience. How did meeting others help you take action and accept Yara's diagnosis? You realize it's not just about your child, but it's much bigger than that and the impact becomes that much bigger, more powerful and rewarding.  Were you able to keep working or did you stay home to care for Yara full time? The first three years, I tried to do it all— working and focusing on my career, meeting with Yara's therapists at lunch, coming home to work with Yara, staying up all night reading and researching, creating activities for her and obsessing over it all. I got used to this routine and one day I knew I had to stop. I took six months off to focus on Yara, getting research started, collecting data and organizing the group. It was a tough decision and I struggled with it. Fate was kind to me and I'm now able to channel my skill and passion into my work with Jordan's Guardian Angels, connect with other families and make a difference. What are your tips for changing your perspective and mindset in these circumstances? I remember a moment of sulking and I thought about Yara and realized I was letting a beautiful thing that came into my life be a source of pain. I didn't want her to bring me anything but joy. I decided to love and celebrate Yara and give her a chance to make me happy. While thinking of the future can sometimes feel overwhelming, I want to ensure I give Yara the opportunity to continue filling my heart with joy. What work is Jordan's Guardian Angels doing? Jordan's Guardian Angels was started by the Lang family after their daughter Jordan was diagnosed with what is now called Jordan's Syndrome. The foundation has put together a research team from ten institutions and we meet every other month to share updates on the work and treatments path. We were able to get a grant that launched our work forward and we continue to open doors and turn stones over. Jordan's Syndrome has now been connected to Epilepsy, Autism, Alzheimer's, Parkinson's and the work we're doing can potentially bring answers to all these sub groups too. RESOURCES MENTIONED Once Upon a Gene on Clubhouse https://www.joinclubhouse.com/club/once-upon-a-gene Jordan's Guardian Angels https://jordansguardianangels.org/ A Rare Reality: the JGA Podcast https://jordansguardianangels.org/a-rare-reality/ 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 on Clubhouse https://www.joinclubhouse.com/club/once-upon-a-gene
August 26, 2021
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Introducing the AAOS Career Podcast

The AAOS Career Podcast covers professional development topics of interest to the musculoskeletal community, from financial literacy and research opportunities to surgical skills and networking. Conversations between early-career surgeons and experienced attendings offer practical tools for guided growth in the specialty. Part of “The Bone Beat” orthopaedic podcast channel.
August 26, 2021
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24: Listen, Understand, Communicate, Repeat, featuring Kevin Sharer, Shantanu Agrawal, M.D., Adam Bryant, and Marisa Porges, Ph.D

In Episode 24: For this special mash-up episode we dive into interpersonal skills: what they are and how they can make you a better leader. We hear clips from four speakers who hold unique leadership backgrounds across health and other industries. This episode focuses on the particular skills of listening, communication, and teamwork. These skills are necessary for up-and-coming leaders, and they can be further developed at any leadership stage. Key Insights: Listening as an Art Form. Kevin Sharer, former Chairman and CEO, Amgen and co-author of “The CEO Test,” describes how he learned that he needed to be a better listener. (2:45) Hearing the Team. Dr. Shantanu Agrawal, Chief Health Officer, Anthem, touches on how listening guides leaders when they take on new roles. (5:07) Simplifying the complex. Listen to Adam Bryant, journalist, Managing Director, The ExCo group and co-author of “The CEO Test,” discuss how to be a better communicator. (6:42)  Empowering Yourself and Others. Marisa Porges, Ph.D., Head of School, The Baldwin School and author of “What Girls Need,” discusses how leadership principles influence teamwork. (8:41)
August 26, 2021
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Catching America's Top Cancer Killer

New national guidelines say millions more Americans should get screened for lung cancer. The test can save lives, but it's inaccessible to many and harmful to some. How should we balance the promise and perils of lung cancer screening?Guests:Otis Brawley, MD, Professor of Oncology, Johns Hopkins University School of MedicineLisa Carter-Harris, PhD, APRN, Behavioral Scientist and Adult Nurse Practitioner, Memorial Sloan Kettering Cancer CenterCherie Erkmen, MD, Professor of Thoracic Surgery and Director, Lung Cancer Screening Program, Temple UniversityElla Kazerooni, MD, Professor of Radiology, University of MichiganIda Pittman, lung cancer patient, Temple University Hospital Helena Price, Ida’s cousin and health care advocateGerard Silvestri, MD, Professor of Pulmonology, Medical University of South CarolinaDig deeper into the research and tradeoffs of lung cancer screening on our website: https://tradeoffs.org/2021/05/27/catching-americas-top-cancer-killer/Read a transcript of this episode: https://tradeoffs.org/2021/05/27/catching-americas-top-cancer-killer-transcript/Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
August 26, 2021
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Effisode – From the Sidelines

Intro music by Scott Holmes
August 24, 2021
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Succeeding in the Impossible with Sabrina A. Kuhn, PhD.

Dr. Sabrina A. Kuhn currently provides consultative services in Quality Improvement to health plans and health systems around the country while residing in Dallas, TX. She has worked in Quality for the last 15+ years in a managed care environment, the provider community, and the city government. She has spent 7 years in Public Health and the last 25 years in behavioral health. Dr. Kuhn has also served as an adjunct professor for 12 years teaching various psychology courses including Cultural Competency. She is a certified Cultural Competency trainer and holds a yellow belt certification in LEAN Six Sigma for Healthcare. She has worked in every level of care from the state hospital to owning a private practice. She received her doctorate in Counseling Psychology from Temple University in 2011. In her spare time, she enjoys traveling, live music, and her biggest joy is spending time with her husband and six-year-old son Isaiah. Here in Episode #132, Sabrina starts our show with a leadership mindset centered on inspiration and perseverance. She shares how career burnout paved the path for a successful executive-level career in healthcare quality. Sabrina shares with the many faces of quality that she has experienced at key stages of her journey. She gives a personal reflection connected with receiving adequate resources while leading a quality team. Sabrina shares her approach to assessing the current state of quality in her organization. She highlights a career aha moment focused on accountability, transparency, and owning your fails. Sabrina highlights the power of building strong relationships; and gives her thoughts on the impact to come with rapidly changing regulatory standards. She places a call to action for more equitable salaries for healthcare quality leaders; and shares her approach for checking in with team members · Connect with Sabrina on LinkedIn · Checkout Sabrina’s Podcast · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
August 24, 2021
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Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short

ONCE UPON A GENE - EPISODE 096 Finding Peace and New Energy to Dig Deeper After 18 Years Undiagnosed with Billie Short Billie Short is the mom of a 20 year old daughter that has an undiagnosed rare disease. She shares what it's like to be a caregiver with chronic stress.  EPISODE HIGHLIGHTS Share a bit about yourself and your daughter. I've been caring for my adult daughter Emily for 20 years. She was a typical baby when she was born and I had an easy birth. At about three months old, I noticed she wasn't meeting milestones and we started testing. We've continued testing and determined she has some sort of genetic anomaly and we don't know what it is. Emily is non-verbal and non-ambulatory and has a lot of the same symptoms of Rett Syndrome.  How do you embrace not having a diagnosis? I'm at peace right now. If Emily never got a diagnosis, I would be okay. She is physically healthy and she's outgrown a lot of issues and I'm grateful for that. Recently, I've become more curious to seek answers as testing has changed, but not having a diagnosis offers some comfort in ignorance because I'm present focused and not diagnosis focused.  How have you managed your stress as a caretaker? The first 18 years, I was bitter and angry. In the last 2 years, I've learned to find the calm in the chaos and the zen in the zoo. It's been a mind change because this is our life and it's a beautiful life. I embrace the chaos and roll with it. My husband has depression which was brought on in part when Emily was born. When Emily was 18, he was able to get the resources he needed and we were able to break through that. So many parents don't take time to take care of their own health because they're focused on their children and when something forces you to face it, you have to re-evaluate everything.  How do you feel healthier as a caregiver? I started out trying to lose weight I gained over the years and I learned a lot about self-care and caregiver burnout. I learned to focus on my physical and mental well-being so that I could continue caring for Emily in the future. I also shifted my thinking of caring for Emily as a gift, not a burden. Changing the way I thought about caring for Emily really changed things. I'm a caregiver of myself first and ensure I'm rested, eating well and getting help from my resources so that I can be a caregiver to my daughter with an open heart, not resentment. How did you implement better self-care? I started turning the tv off and going to bed earlier so I could get up earlier and journal. I have an accountability group, I plan meals and plan as much as I can with my superpower- pivot and adapt. I know my plans may get interrupted, but I will figure out how to block time out later for it so it still happens. Part of my self-care has also been listening to podcasts which is getting me connected and helps me feel like I have the bandwidth to support other moms. RESOURCES MENTIONED Once Upon a Gene on Clubhouse https://www.joinclubhouse.com/club/once-upon-a-gene Conversation for Change https://conversation4change.com/ 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 on Clubhouse https://www.joinclubhouse.com/club/once-upon-a-gene
August 19, 2021
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23: Leadership is About Solving the Right Problems with Ruth Williams-Brinkley, Regional President, Kaiser Permanente, Mid-Atlantic

Meet Ruth Williams-Brinkley:Ruth Williams-Brinkley is Regional President, Kaiser Permanente, Mid-Atlantic. In this role, Ruth oversees all of Kaiser Permanente’s care delivery and health plan operations in Washington, D.C., and suburban Maryland, Baltimore, and Northern Virginia. Previously, Ruth served as CEO for multiple health systems, including Kentucky’s largest integrated health system, KentuckyOne. She began her career as a nurse, earning a MS in Nursing Administration from DePaul University.Key Insights:Ruth’s experience spans from direct patient care, to operations management across four states and districts. She is well-versed in Kaiser Permanente’s unique patient care and payment model, and oversees the building of healthy ecosystems around the patient.Filling Gaps with Technology. Ruth discusses the platform developed by Unite Us and how it addresses social-determinants of health. (32:27)Leading People. Healthcare is full of promising technology, but at its core, patient care and leadership are about people. (10:10)Problem Solving. Ruth explains how her background influenced her career and developed her ability to problem-solve. (34:49)Mentorship. Mentors can provide powerful, early-career advice. And once you are established, you can return the favor to others. (37:58)
August 19, 2021
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Calling the Shots: Should Employers Mandate COVID Vaccines?

With more employers requiring their employees to get vaccinated against COVID-19, we dig into the research to help employers weigh the pros and cons. [This episode was originally published on May 20, 2021.]Guests:Sayeh Nikpay, PhD; Tradeoffs Contributing Research Editor; Associate Professor of Health Policy and Management, University of MinnesotaCorey White, PhD; Assistant Professor of Economics; Cal Poly, San Luis ObispoBrandyn Churchill, PhD Candidate, Vanderbilt UniversityLearn more about Corey and Brandyn's research and the pros and cons of employer mandates on our website: https://tradeoffs.org/2021/05/20/calling-the-shots-should-employers-mandate-covid-vaccines/Sign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterSupport this type of journalism today, with a gift: https://tradeoffs.org/donateFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
August 19, 2021
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A Journey to Healthcare Quality and Safety with Moataz Mohammad

Moataz Mohammad Maamoun Hamed is a 27-year-old Egyptian, known for my honesty, friendliness, and perseverance. In college, Moataz majored in economics, but for many reasons that he shares in our interview, decided to make a huge career shift into Healthcare Quality. Some people questioned his decision saying he didn’t have a healthcare background, but Moataz only listened to those who supported him and ultimately found his path. Moataz has successfully completed a Professional Postgraduate Diploma in Total Quality Management at the American University in Cairo, trained in “Healthcare Quality and Accreditation at Al-Mokawilon-Al-Arab Hospital, self-studied and became a certified professional in Healthcare Quality and Patient Safety after passing both the CPHQ and the CPPS exams with outstanding marks. He also became an IRCA-Certified ISO 9001 auditor, and an ISQUA Member and Fellow. Lastly, he journeyed to the UK to earn a Master of Science in Quality and Patient Safety Improvement. Today, Moataz serves as a Quality Specialist at a 100-bed hospital in Jeddah-KSA and provides daily leadership in the hospital’s accreditation preparation efforts, along with many other Quality Management and Patient Safety activities. Moataz’s journey is clearly one of passion and inspiration; as he aspires to work in the quality department of a prestigious healthcare institute, where he can continue to systematically make a difference in improving the safety of patients as well as the quality of care they receive. Here in Episode #131, Moataz starts our show reminding us that quality is a journey and not a destination. He shares the career transformations he's gone through, starting in economics and growing into a Master of Health Care Quality and patient safety. Moataz gives an overview of the ISQua organization; as well as an introduction to the beautiful city of Jeddah where he lives. Moataz shares a career dark moment connected to the need of finding a suitable mentor. Moataz demonstrates how he leverages empowerment as an approach for building strong teams. He gives a number of best practices for promoting change and change management. Moataz tells us his strategy for using surveys to garner engagement. He shares his excitement for the growing focus for quality and safe patient safety in his country; and places a call to action for QI to become a standard curriculum for all healthcare disciplines. And closes our show with his best piece of career advice to do what you love · Connect with Moataz on LinkedIn · Access the Healthcare QualityCast LinkedIn Group · Leaves Us a Rating --- Send in a voice message: https://anchor.fm/healthcarequalitycast/message
August 17, 2021
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