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Effisode – Unexpected Moments in the Stairwell

Intro music by Scott Holmes
May 18, 2021
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Rare Disease – The Ultimate Special Teams with Uplifting Athletes with Rob Long

ONCE UPON A GENE - EPISODE 082  Rare Disease - The Ultimate Special Teams with Uplifting Athletes with Rob Long Rob Long is the Executive Director at Uplifting Athletes and is a rare brain cancer survivor. His passion and drive for Uplifting Athletes makes him an inspirational hero and he fights relentlessly everyday so others don't have to face challenges in isolation.  EPISODE HIGHLIGHTS Can you share your story about discovering a rare illness in college? In my senior year at Syracuse University, I was focused on the NFL city I was going to end up in and I was one of the best football players in the country in the draft that year. Through my senior year, I wasn't feeling like myself. I had sensitivity to light, I was ill in the mornings and had headaches almost every day. I disregarded the symptoms until one morning I woke up really sick and saw a doctor. I got an MRI which revealed a large growth in my brain. I saw a specialist the next day and a few hours later was on a plane home to see a neurosurgeon. How did your diagnosis leave you feeling?  I had never felt so alone and isolated, but at the same time, I knew my teammates and the football community were there to support me. There was nothing anything could say to provide comfort. I just wanted a doctor to tell me that I was going to be alright, and no doctor was able to tell me that. No matter how supportive my friends, family and teammates were, my time was finite and it was a challenging experience. Where did you find support? It was a journey. For so long, I tried to escape my reality through football. Despite my diagnosis and treatment protocol, I maintained the idea that I wanted to play football in the NFL and I wasn't going to let cancer determine when I was done playing or living my life. That attitude kept me going and I kept training and kept working out to stay healthy. I wanted to find a way to cure cancer through making it to the NFL and raising a lot of money. It wasn't until later that I discovered I was suffering from PTSD and mental health issues that stemmed from my diagnosis. When I connected with a mental health professional, I found ways to talk through what I experienced and get the help I needed and change my life for the better.  What is Uplifting Athletes? Uplifting Athletes is a nonprofit organization and we work to serve the rare disease community to inspire hope through the power of sport. We developed a program to uniquely impact rare disease research through the Young Investigator Draft program. We draft, support, celebrate and fund the top rare disease researchers across the country to honor the work they're doing and fund rare disease research. Patient advocacy organizations nominate rare disease researchers to be recognized by Uplifting Athletes for the Young Investigator Draft. LINKS & RESOURCES MENTIONED Uplifting Athletes https://www.upliftingathletes.org/ Young Investigator Draft https://www.upliftingathletes.org/young-investigator-draft Seattle Rare Disease Fair Virtual Conference (2021) http://rarediseasefair.com/?p=164 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/    
May 13, 2021
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3 Employers, 2 Wonks and 1 Health Insurance Mess (LIVE!)

In this special live episode, policy experts and employers debate the best way to improve the health insurance that 150 million Americans get through work. This session was part of “The Promise of Health Reform and a Public Option in a Biden Administration,” a virtual conference put on by the Leonard Davis Institute of Health Economics at the University of Pennsylvania and United States of Care.Guests:Brian Blase, PhD, CEO, Blase Policy Strategies; Senior Fellow, Galen Institute; Senior Fellow, Foundation for Government AccountabilitySuzanne Delbanco, PhD, MPH, Executive Director, Catalyst for Payment ReformAllison Hoffman, JD, Professor of Law and LDI Senior Fellow, University of PennsylvaniaShaundell Newsome, Founder, Sumnu Marketing; Co-Chair, Small Business for America’s FutureSheila Savageau, U.S. Health Care Leader, General Motors (edited) Dig deeper into the research and tradeoffs of integrated care on our website: https://tradeoffs.org/2021/05/13/3-employers-2-wonks-and-1-health-insurance-mess/LISTEN BACK to our recent episode how what other employers are managing the cost of health care: https://tradeoffs.org/2021/02/18/the-high-price-of-lowering-health-costs/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.
May 13, 2021
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Rare Disease Adoption with Josh and Monica Poynter

ONCE UPON A GENE - EPISODE 081 Rare Disease Adoption with Josh and Monica Poynter Josh and Monica Poynter have a son named Tag with severe Hemophilia Type A, a rare genetic disease which makes him vulnerable to prolonged bleeding. Despite this, these rare parents knew they wanted to grow their family. They were unable to have another biological child and welcomed their adopted son Trey into their family. Trey shares the same genetic disease as Tag. He was abandoned at 2 years old and spent 7 years living in an orphanage in China. Trey is now in his forever home with his forever family and Josh and Monica share their heartwarming family and adoption journey story with us.  EPISODE HIGHLIGHTS What type of Hemophilia do Tag and Trey have and how are they affected by it? They both have Hemophilia Type A and are missing the factor VIII clotting protein. If they're not receiving medication to prevent bleeding, they bleed easily and bleed longer. Without a preventative regiment, bleeding can be life threatening.  What empowered you to adopt another child with the same rare disease? Once Tag started a preventative regiment and wasn't bleeding, it became routine and we became more comfortable. At this point, I think it would be more difficult to have a child without Hemophilia.  What obstacles did you face with adoption? We knew our family wasn't done growing. When we started the adoption process, we found Trey, read his story and saw a video of him trying to walk with an active bleed in his knee. He had the biggest smile on his face and we were all-in. There was a sense of urgency that we had to hurry. Our family was behind us to support us and help us fund raise, watching Tag while we traveled and interviewed.  What would you tell other families considering adoption of a rare disease child? You can give a child with a rare disease a completely different life and a different perspective on how to live their life. It is life changing for the child, but even more so for you as a parent. It's a challenge, it's work, it's stressful-- but it's worth it in the reward of blessings you experience. We started with no knowledge. If it's something you're considering, take the first step in faith. Help is available and you’ll get through it, but you have to take the first step. LINKS & RESOURCES MENTIONED Hand in Hand International Adoptions https://www.hihiadopt.org/ Kentucky Hemophilia Foundation https://www.kyhemo.org/ EPISODE 078 - Media with a Mission with Believe Limited CEO Patrick James Lynch https://effieparks.com/podcast/episode-078-media-with-a-mission-with-believe-limited-ceo-patrick-james-lynch 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/    
May 6, 2021
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Presenting The Dose: Asian Americans and the Dual Pandemic

Racism against people of Asian descent is not a new problem, but it’s been exacerbated lately by politicians using racist rhetoric to describe the coronavirus. Asians in America are now facing a dual pandemic: a heightened fear of racist abuse, from verbal slurs to physical assault, on top of all the anxiety of living through COVID-19. A conversation from our colleagues at The Dose.Guests:Vivian Shaw - a sociologist at Harvard UniversitySuzanna Park - PhD Candidate at Oregon State University in Global HealthMore information about eh AAPI COVID-19 project and other resources on our website: https://tradeoffs.org/2021/05/06/presenting-the-dose-asian-americans-and-the-dual-pandemic/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.
May 6, 2021
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Effisode – Empathy Puts Some Pep in Your Step

Intro music by Scott Holmes
May 4, 2021
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Public Option(al): What Happened to Biden's Big Idea?

Despite President Biden’s campaign promise to create a public option, the policy has been missing from his first 100 days in office. A handful of states, however, are forging ahead with public option legislation.Guests:Heather Howard, Princeton School of Public and International AffairsSabrina Corlette, JD, Georgetown UniversityDig deeper into the research and tradeoffs of integrated care on our website: https://tradeoffs.org/2021/04/29/public-option-what-happened-to-bidens-big-ideaSign 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.
April 29, 2021
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Rare Disease and Grief – Its Ok That You're Not Ok with Megan Devine

ONCE UPON A GENE - EPISODE 080 Rare Disease and Grief - It’s OK That You’re Not OK with Megan Devine Megan Devine is the author of It's OK That You're Not OK, a psychotherapist, a grief advocate and communication expert dedicated to helping people face their toughest experiences. This book, her story and explanation of grief changed everything for me. After this episode, be sure to get a copy of the book for yourself, join her community and check out her new illustrated journal, How to Carry What Can't Be Fixed. EPISODE HIGHLIGHTS Can you share the background on how your book came about? I've been a psychotherapist for about 18 years working with trauma, but when my partner died in an accident, my perspective on loss changed. I saw that the way we talk about grief in culture is flawed. When my partner died, I closed my practice. I began speaking about grief publicly, training and writing books to do what I could to help grieving people feel more heard and supported. Today, I'm a psychotherapist, author and grief advocate and I talk about the ways we get grief wrong and what to do better for us and for others.  What are the biggest misconceptions about grief? Grief usually belongs to death, but grief is a spectrum and you get to claim grief for yourself. Just because other people may have it worse doesn't mean you can't grieve. You don't have to demote your grief based on other people having more of a right to be grieving. All grief is valid, but that doesn't mean that all grief is the same. If we can be curious about the different ways we grieve, it's a way for us to come together to talk about it and meet each person's loss and grief with curiosity instead of trying to fit it into a one-size-fits-all package.  What do you mean by "some things can't be fixed and they must be carried"? We live in a problem-solution culture. Not everything has a solution and not everything works out for the best. It's not our job as humans to rise above everything. It's not realistic. Tell me about the movement you've created for people to acknowledge their grief. When we tell the truth about grief and let people tell their truth about their own experience, they get to just be in pain. If you think about grieving, you often find that you have to defend your grief and experience. That need to defend your experience causes annoyance and suffering because you're expending energy on defending your right to feel how you feel instead of feeling supported. Refuge In Grief is online, on Instagram, Facebook and Twitter. Refuge In Grief is the grievers community. We have to start normalizing grief and talking about what it's really like and what power there is in healthy grief. There's also a Writing Your Grief course that has awesome writing prompts, but mostly a magical community that forms during the live sessions. We open new sessions about every five weeks. How can we show up for someone who is grieving and support them? Interrupt your impulse to fix. It's human to find it difficult to watch someone you care about in pain and not try to make it better. Recognize your impulse to make it better and think about what you can do that would feel supportive in the moment. Don't assume you know what someone needs, don't jump in with solutions, but instead acknowledge and offer what you can offer and ask if your offering is helpful. LINKS & RESOURCES MENTIONED It's OK That You're Not OK https://www.amazon.com/gp/product/B073XXYKLP/ref=dbs_a_def_rwt_bibl_vppi_i0 How to Carry What Can't Be Fixed https://www.amazon.com/gp/product/1683643704/ref=dbs_a_def_rwt_bibl_vppi_i3 Writing Your Grief https://refugeingrief.com/writing-your-grief/ Speaking Grief Documentary https://speakinggrief.org/ Refuge in Grief https://refugeingrief.com/ Refuge In Grief on Instagram https://www.instagram.com/refugeingrief/ Refuge In Grief on Facebook https://www.facebook.com/refugeingrief Refuge In Grief on Twitter https://twitter.com/refugeingrief
April 29, 2021
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#18 Save the Date for Orthopaedic Advocacy Week

AAOS President Daniel K. Guy, MD, FAAOS, extends a special invitation for members to participate in Orthopaedic Advocacy Week May 24-28, 2021. He explains how the new, completely virtual event is different from previous advocacy opportunities, what issues orthopaedic surgeons will raise with lawmakers, and why individual participation is “paramount” for amplifying year-long advocacy efforts on healthcare policy issues impacting musculoskeletal care. Learn more and sign up for the event. Hosted by: Kristen Coultas, AAOS Advocacy Communications Director and Cavan Jones, AAOS Government Relations Director
April 27, 2021
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Creating Space for Mental Health for Men Living with Rare Diseases with David Ross

David Ross is a patient advocate, passionate about mental health and creating space for males experiencing mental health struggles. His activism began in 2017 when he was diagnosed with a rare disease called Cowden syndrome. He became dedicated to raising awareness and helping to support others impacted by Cowden syndrome. EPISODE HIGHLIGHTS When were you introduced to the rare disease world? I was diagnosed with my rare disease, Cowden syndrome, about three and a half years ago and it's been a roller coaster journey learning about my condition, managing my health and the impact on my family life How did your diagnosis impact your family life? It started with a letter from my mother that she had been diagnosed with the same condition about a year before she passed away. The letter was for me to provide to my primary doctor with information for getting tested. At the time, I didn't know what to do with the letter and I was too busy living my life and too scared to deal with the possible consequences of the letter because I could see the impact it had on my mother's health. After she passed away, I decided to get tested and was found to have the same condition. The genetics counselor talked me through the process for getting tested and we talked about my daughter also needing to be tested. It was a difficult decision to put her through that at age 11. She was found to not be a carrier of the condition, which was a relief. Then I faced what to do, how my condition would impact me, my wife and daughter.  How did you get started on your mental health and advocacy journey after your diagnosis? I moved quickly because I needed to know more about my condition and connect with other patients. That quickly turned into supporting others. It was too late for my mother, but I wanted to do what I could for others and offer support where I could around their health. I was involved in a clinical trial at Boston Children's Hospital, and the opportunity made me feel like I was making a difference and helped my family connect with other families.  How do you feel like you're making a difference in the rare disease community?  I've looked for opportunities that I can do from home, setting up international Zoom calls for male patients and caregivers because there are a lot of fantastic female advocates, but there don't seem to be as many male advocates, parents or patients talking about rare disease and how it impacts their mental health. It's been good to do that and learn from other guys speaking about their health and speak about what I'm going through.  What support have you found to be helpful along the way? After my mother passed away, I went to a bereavement support group and it was full of older people and mostly women. It felt like there was no connection with the people in the group, but it was a learning curve because I gained a lot talking to people about their losses. It made me feel lucky for my loss compared to others and helped me to look at the positive. There have also been supportive rare disease friends who get what I'm saying and offer knowledge and guidance.  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/  
April 22, 2021
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Preventing HIV Just Got A Lot Cheaper. What Took So Long?

After nearly a decade of sky-high prices, generics have sent the price of the HIV prevention drug PrEP plummeting. What kept it so expensive for so long, and will the price drop help us finally eradicate HIV?Guests:Robin Feldman, Professor of Law, UC Hastings; Director of the Center for InnovationTahir Amin, Co-Executive Director, I-MAKOni Blackstock, MD, Primary care and HIV physicianTim Horn, Director of Health Care Access, National Alliance of State and Territorial AIDS DirectorsCraig Garthwaite, Director of Health Care, Kellogg School of Management, Northwestern Univ.Dig deeper into the research and tradeoffs of prescription drug pricing on our website: https://tradeoffs.org/2021/04/22/preventing-hiv-just-got-a-lot-cheaper-what-took-so-long/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.
April 22, 2021
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Effisode – Adventures in the Grocery Store

Intro music by Scott Holmes
April 20, 2021
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Media with a Mission with Believe Limited CEO Patrick James Lynch

Media with a Mission with Believe Limited CEO Patrick James Lynch Patrick James Lynch has to inject himself with medication every other day because his liver doesn't produce a protein that helps his blood vessels seal when they burst. He and his brother were both born with hemophilia and he's since lost his brother to the disorder. After his loss, he felt compelled to reach others to provide support and awareness about the importance of life-sustaining medicine. Patrick is the founder and CEO of Believe Limited, he hosts camps, produces web series, creates workbooks and workshops, hosts the BloodStream podcast and has produced a film called Bombardier Blood. LINKS AND RESOURCES MENTIONED Believe Limited https://www.believeltd.com/ BloodStream Podcast https://podcasts.apple.com/us/podcast/bloodstream/id1133574474?mt=2 Bombardier Blood https://www.bombardierblood.com/ My Beautiful Stutter https://www.mybeautifulstutter.com/ Stop The Bleeding! https://www.youtube.com/watch?v=UCfGfh6Pax0 The Birth Story: Welcome Vivian Bea‪!‬ https://podcasts.apple.com/us/podcast/the-birth-story-welcome-vivian-bea/id1133574474?i=1000513633326 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/
April 15, 2021
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Losing a Hospital

More than 130 hospitals have closed in rural America over the last decade. Reporter Sarah Jane Tribble spent a year embedded in one small Kansas town as they dealt with their own hospital closure.Guest: Sarah Jane Tribble, Senior Correspondent, Kaiser Health NewsRead a transcript of this conversation: https://tradeoffs.org/2020/10/08/losing-a-hospital/Hear more of Sarah Jane's reporting about Fort Scott on the first season of Where It Hurts: whereithurts.showSign up for our weekly newsletter to see what research health policy experts are reading right now, plus recommendations from our staff: bit.ly/tradeoffsnewsletterFollow us on Twitter: https://twitter.com/tradeoffspod  See acast.com/privacy for privacy and opt-out information.
April 15, 2021
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Top Tips on Advocating For Your Child with Momvocate Kara Karlson

Kara Karlson is a fellow rare disease mama and attorney who is advocating hard in the policy world. She's currently serving on the Governor's Developmental Disability Advisory Council ("DDAC") where she helps set policy and develop programs for the developmentally disabled in Arizona. She is sharing her top tips for becoming your best advocate.  EPISODE HIGHLIGHTS Tell me about your daughter and how you are part of the rare disease community. I got involved with rare disease through my daughter. I had an uneventful pregnancy, everything was fine and she was born a healthy weight. Then she was having trouble eating and that got us started down a long road that eventually led to a diagnosis of mosaicism for multiple marker chromosomes. Originally my daughter was diagnosed with failure to thrive, had postcricoid cushion which was interfering with her feeding, and now she has autism, developmental delays and likely intellectual delays based on a duplicate marker chromosome from portions of 17P and 19. Outside of being a mother, I'm an attorney, so I'm a professional advocate and it's provided me a leg up on getting my daughter the care she needs.  Where do we start advocating? Make sure you have an open line or communication with your providers. Know that they have an ethical obligation to explain things to you in a way that you can understand so that you know what questions to ask and be a strong advocate. If you're being sent home and you're not comfortable, be assertive and communicate that. Get a concrete diagnosis or as concrete as you can. Get specific, qualifying conditions identified so you can qualify your child for programs and services. There are measurements critical to getting care and ensuring therapy is working. Have benchmark measurements to monitor progress. Always obtain medical records so you have insight into the doctor's thoughts and takeaways. From these records, you can take the data and do your own research and you know what documents to include when applying to insurance, providers or state health agencies. What are your thoughts on managing the financial aspects of medically complex kids? There's usually a cash discount of 50% or more or a prompt payment discount, so ask for those options. The providers normally offer payment assistance, so if you're in a position of financial hardship, you can get in touch with a patient advocate at the hospital for assistance. The key is to stay in touch regarding medical expenses and document everything. How do you ask for referrals? If possible, it's best to ask other people you trust. If your child's condition is unique, reach out to other patient groups to see if anyone can refer you. If there's a long waitlist, get on multiple provider lists and seek out other options while you wait. LINKS AND RESOURCES MENTIONED Finding Happy The Podcast‬ Stronger Together   CONTACT KARA Momvocate Website Momvocate on Twitter Movocate Email Momvocate Blog
April 8, 2021
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Biden's $400 Billion Bet on Caring for Older and Disabled Americans at Home

President Biden wants to spend $400 billion to help older and disabled Americans get health care at home as part of his $2 trillion infrastructure proposal, a huge investment in an often neglected part of the health care system.Guests:Howard Gleckman, Senior Fellow, Urban InstituteRachel Werner, MD, PhD, Executive Director, Leonard Davis Institute of Health Economics at the University of PennsylvaniaLearn more and read a full transcript of the episode: https://tradeoffs.org/2021/04/08/bidens-400-billion-bet-on-caring-for-older-and-disabled-americans-at-home/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.
April 8, 2021
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Effisode 018 – Nacho, Nacho Man

TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast CONNECT WITH EFFIE PARKS Website Twitter Instagram Built Ford Tough Facebook Group
April 6, 2021
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AllStripes – Jump Start New Research for Your Rare Disease with Caitlin Nichols

ONCE UPON A GENE - EPISODE 076 AllStripes: Jump Start New Research for Your Rare Disease with Caitlin Nichols Caitlin Nichols is the Scientific Affairs and Research Manager at AllStripes— the first and only research platform dedicated to rare diseases. They make it easy for patients to contribute to new treatment studies from home. They do the work to collect, analyze and de-identify medical records to help power faster and better drug development. They translate medical data into actionable insights to unlock new treatments for rare disease.  LINKS AND RESOURCES MENTIONED Once Upon a Gene TV - YouTube https://www.youtube.com/channel/UCYPzJqCJmStgR32T_5031tQ/featured AllStripes Research https://www.allstripes.com/ 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/  
April 1, 2021
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A New Era of Gun Violence Research

As gun violence surges, researchers are using new federal funding to search for solutions.Emmy Betz, MD, MPH, Associate Professor of Emergency Medicine and Director of the Firearm Injury Prevention Initiative, University of ColoradoJonathan Jay, DrPH, JD, Assistant Professor of Community Health Sciences, Boston UniversityAutumn Parkin, gun owner and advocateIf you or someone you know is having suicidal ideation, please call the Suicide Prevention Hotline: 800 273 8255For more information about gun violence research visit our website: https://tradeoffs.org/2021/04/01/a-new-era-of-gun-violence-research/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.
April 1, 2021
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#17 Policy in Practice: Threats to Orthopaedics in 2021

Prior authorization paperwork, insurance battles over setting of care, and EHR documentation challenges are just a few of the many ways that government policies can stand in the way of patient care. In this episode with new AAOS Advocacy Council Chair Douglas W. Lundy, MD, MBA, FAAOS, we discuss the threats we’re fighting in 2021 and how these rules and regulations impact orthopaedic surgery from Capitol Hill to the operating room. Learn more at AAOS. Hosted by: Kristen Coultas, AAOS Advocacy Communications Director
March 30, 2021
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Rare Mom Madeline Cheney – The Rare Life Podcast

Fellow rare mom and podcast host, Madeline Cheney, is joining me for a chat today. Be sure to check out her podcast, The Rare Life Podcast. And don't forget to subscribe! EPISODE HIGHLIGHTS Tell me about yourself and your family. I am a stay at home mom to four-year-old Wendy, who is medically typical. Two year old Kimball has a very rare disorder. My husband and I live in Utah. When I'm not caring for my children, I devote my time to my podcast. Tell me about Kimball's diagnosis. Kimball has a rare genetic mutation called achondroplasia punctata x-linked type 1, which is a type of skeletal dysplasia with only 125 known cases in the world. The condition affects his bones, he's deaf and blind, has dwarfism, his spine is soft, has no nose bone and low muscle tone. What aspect of Kimball's most recent challenges are you grieving? My main source of grief is how much he has to suffer and how unfair it is. It loops me back to when he was first diagnosed. The unfairness of everything breaks my heart as I watch him go through the challenges he faces. It loops me back to the first and subsequent diagnoses and resurfaces some of the same feelings. I love him more and more each day, which makes this more and more painful.  How do you manage your stress and emotional wellbeing? I've learned a lot from other parents and my therapist to feel grief and lean into it rather than suppress it or push it down. I've learned that it's easier to process things in the moment rather than process it later in the future and have to deal with it then. What is the catalyst that makes you the mom that Kimball needs? I'm better able to empathize in ways that I couldn't before and I understand the gravity of not being able to understand other people's experiences. Unlike my pursuit of being strong and trying to always portray that to others, I now know in the depth of my bones how strong I am because of the things I've gone through. That's my main evolution. Now with upcoming challenges with Kimball, even when I feel weak, I know I'll get through it and it's valuable to know that about myself. What do you want to leave listeners with? Competition and comparison makes any journey so much worse. Don't compare yourself or your situation and don't isolate yourself because of it. I encourage you to work on that if you struggle with it. Don't let that be a reason your don't share your story because sharing will help with healing and connecting with other people. LINKS AND RESOURCES MENTIONED Finding Happy The Podcast‬ https://www.findinghappythepodcast.com/ Stronger Together https://strongertogetherevent.com/ The Rare Life Podcast https://therarelifepodcast.com/ 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/  
March 25, 2021
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Rare Mom Madeline Cheney – The Rare Life Podcast

ONCE UPON A GENE - EPISODE 075 Rare Mom Madeline Cheney - The Rare Life Podcast Fellow rare mom and podcast host, Madeline Cheney, is joining me for a chat today. Be sure to check out her podcast, The Rare Life Podcast. And don't forget to subscribe! EPISODE HIGHLIGHTS Tell me about yourself and your family. I am a stay at home mom to four-year-old Wendy, who is medically typical. Two year old Kimball has a very rare disorder. My husband and I live in Utah. When I'm not caring for my children, I devote my time to my podcast. Tell me about Kimball's diagnosis. Kimball has a rare genetic mutation called achondroplasia punctata x-linked type 1, which is a type of skeletal dysplasia with only 125 known cases in the world. The condition affects his bones, he's deaf and blind, has dwarfism, his spine is soft, has no nose bone and low muscle tone. What aspect of Kimball's most recent challenges are you grieving? My main source of grief is how much he has to suffer and how unfair it is. It loops me back to when he was first diagnosed. The unfairness of everything breaks my heart as I watch him go through the challenges he faces. It loops me back to the first and subsequent diagnoses and resurfaces some of the same feelings. I love him more and more each day, which makes this more and more painful.  How do you manage your stress and emotional wellbeing? I've learned a lot from other parents and my therapist to feel grief and lean into it rather than suppress it or push it down. I've learned that it's easier to process things in the moment rather than process it later in the future and have to deal with it then. What is the catalyst that makes you the mom that Kimball needs? I'm better able to empathize in ways that I couldn't before and I understand the gravity of not being able to understand other people's experiences. Unlike my pursuit of being strong and trying to always portray that to others, I now know in the depth of my bones how strong I am because of the things I've gone through. That's my main evolution. Now with upcoming challenges with Kimball, even when I feel weak, I know I'll get through it and it's valuable to know that about myself. What do you want to leave listeners with? Competition and comparison makes any journey so much worse. Don't compare yourself or your situation and don't isolate yourself because of it. I encourage you to work on that if you struggle with it. Don't let that be a reason your don't share your story because sharing will help with healing and connecting with other people. LINKS AND RESOURCES MENTIONED Finding Happy The Podcast‬ https://www.findinghappythepodcast.com/ Stronger Together https://strongertogetherevent.com/ The Rare Life Podcast https://therarelifepodcast.com/ 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/  
March 25, 2021
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No Simple Answers: A COVID Q&A With NYT's Apoorva Mandavilli

We sit down with one of the top pandemic reporters in the country to answer to answer listener questions.Guest: Apoorva Mandavilli, Science and Global Health Reporter, New York TimesNOTE: This episode incorrectly states that more than 125 million people had received vaccinations at the time the episode aired. More than 125 million doses had been administered, but fewer than 90 million people had received at least one dose.Read a full transcript of this episode on our website: https://tradeoffs.org/2021/03/25/no-simple-answers-a-covid-qa-with-nyts-apoorva-mandavilli/Read more of Apoorva's answers to listener questions, see what research health policy experts are reading right now, and get recommendations from our staff in our free weekly newsletter. Sign up now: 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.
March 25, 2021
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Effisode – An Advocate's Elevator Pitch

Intro music by Scott Holmes
March 23, 2021
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