Épisodes

  • The Patient-First 2022 Outlook for Rare Disease

    The Patient-First 2022 Outlook for Rare Disease
    Oct 21 2021
    On this episode, we hear from a variety of voices in the front lines of rare patient-first care. With pandemic uncertainty looming, there are a lot of questions that are constantly emerging for people with rare conditions and their families. How can potential challenges be seen as opportunities for improved quality of care? What are the creative ways that pharma companies are creating awareness for rare conditions? Be inspired and be challenged to rethink your 2022 strategic plans. I can tell you that this one really inspired me! Here are the bios for the awesome Optime Care team that we had on this episode: Dr. Brandon Salke, general manager Dr. Brandon Salke serves as the pharmacist-in-charge and General Manager at Optime Care in Earth City, MO. He previously served as a team pharmacist for Dohmen Life Science Services, where he helped launch several new care programs. He is specialized in specialty pharmaceuticals, particularly ultra-orphan, orphan, and rare disease. Dr. Salke has been involved in all aspects of operations (planning, process integration, project management, etc.) for pharmaceutical manufacturers. This includes clinical trials to commercialization and assisting in commercial launches (and relaunch) of specialty pharmaceuticals. Dr. Salke completed his PharmD from St. Louis College of Pharmacy (StLCOP) in St. Louis, MO and holds the Certified Specialty Pharmacist (CSP) credential from the National Association of Specialty Pharmacy. He is currently an active member of the National Association of Specialty Pharmacy (NASP), American College of Clinical Pharmacy (ACCP), American Society of Hospital Pharmacists (ASHP), and the Missouri Pharmacists Association (MPA). Dr. Salke currently holds a pharmacist license in 20 states and the US Territory, Guam, allowing him a deep understanding of state and federal pharmacy. Stephanie Wasilewski, vice president Stephanie Wasilewski is a VP, Care Director at Optime Care. Stephanie has been a pharmacist for over 15 years and is passionate about providing best-in-class patient care. She started her journey in the retail pharmacy setting, eventually managing a pharmacy for 5 years. Her career path led her to the mail order setting and then she was called to Optime Care where she now manages a program for patients with Hereditary Angioedema (HAE). Jessy Broughton, care director Jessy Broughton is a Care Director at Optime Care. She has been at Optime Care for 2 years and loves the chance to help make a difference in the lives of our patients. Prior to Optime Care, Jessy worked in Care Coordination at St. Luke’s Hospital. There she lead a medication adherence program and was instrumental in receiving a 5 star rating for Medicare measures. She also has a background in retail pharmacy, as well as attended pharmacy school. Jessy works hard to make sure her team provides the best experiences to our patients. Hannah Morgan, pharmacist Hannah is a team pharmacist at Optime Care and has been with the company since 2018. She has worked as a pharmacist for the last 8 years and has a passion for helping others. After years in community pharmacy, Hannah found her way to Optime Care where she takes pride in her job as pharmacist. Hannah is committed to providing quality patient care and is enthusiastic about applying her insight, creativity to help make a difference in the lives of others.
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    52 min
  • S2E7 - Doug Lindsay, Rare Disease Innovator and Personal Medical Consultant

    S2E7 - Doug Lindsay, Rare Disease Innovator and Personal Medical Consultant
    Aug 31 2021
    21- year-old Doug Lindsay seemingly had his whole life in front of him. However, in college, that future was turned upside down, leaving him bedridden and homebound dealing with his autonomic-adrenal condition. After countless treatments and strategizing with the best in the medical field, Doug sought to have a surgery done that would blur ethical lines in the medical field, but would allow him to recover from his rare ailment. Now, Doug continues to improve medicine. Having worked with 35 senior faculty at 28 institutions, developing new uses for 5 existing prescription drugs, winning a national first court case protecting patients’ rights, and developing the concept for the two successful, innovative adrenal surgeries used to treat his case, Doug continues to be an advocate for patient care. On this episode, Doug tells his story, highlighting the highs and lows of the journey and how he looks to help others facing rare medical challenges. Please subscribe and keep listening to Rare Voices! Music Credits: Westpoint Instrumental by  Sun Shapes
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    1 h et 14 min
  • S2E6: Effie Parks, Podcast Host, Once Upon a Gene, Mother to a Rare Disease Warrior

    S2E6: Effie Parks, Podcast Host, Once Upon a Gene, Mother to a Rare Disease Warrior
    Jul 22 2021
    The families of people with rare conditions often feel like they have to live two lives. For the person they love and care about, their son or daughter or their parent, they want to put on a tough and sunny face. When they take their loved one out in public, they want everyone to see just how strong the family is and how everyone should be grateful. They grit and smile through the treatment side-effects, through awkward glances, through long nights. Then there is the other life. The one where they just break down. The one that they try to keep hidden from the world and maybe even that person they care about. They keep it hidden because they may come across as weak or ungrateful or even self-centered. But, of course, they are humans. And they are bound to feel the weight of despair, the confusion of unpredictability, and the odd joy of loving someone through tough times. Unless you have had to live this dual life, everything that I just said can still just remain a theory – something that you can turn off now and go about your day. But for the people with rare conditions and the families around them, this is a reality – day-in and day-out. Effie Parks is someone who has lived that dual life and come out the other side. And she is someone who has merged those two lives and offered an alternative for caregivers and advocates. She is the proud mother of Ford, her son born with an extremely rare condition. Her desire to create the best life for Ford drove her into advocacy and to create “Once Upon a Gene,” an inspiring podcast that reveals the stories of the people living dealing with that dual life. On this episode, we both get real and swap stories about the despair of diagnosis day, the hopes we have for our families, and our challenge to a health care industry still blind to the nuances of life with rare disease. It is an unflinching look at real life, and I know that you will enjoy it. Please subscribe and keep listening to Rare Voices! Effie Parks Bio Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings. After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks. When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy. Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with rare disease. Music Credits: Westpoint Instrumental by  Sun Shapes
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    47 min
  • S2E5: Sanath Kumar Ramesh, Founder of OpenTreatments Foundation

    S2E5: Sanath Kumar Ramesh, Founder of OpenTreatments Foundation
    May 24 2021
    Being rare is, by definition, a lonely and hopeless thing. Loving and caring for someone with a rare condition can sometimes feel even more lonely and hopeless. You spend most of your free time thinking how can I help them or influence the health care industry to find a cure for the rare condition my father, mother, child, brother, sister, husband or wife have? Our guest today is a visionary and inspiration for anyone who has had that lonely hopeless feeling. Sanath Kumar Ramesh is the father of a two-year-old boy who is one of only 9 kids worldwide with an ultra-rare genetic disease. It is hard to find conditions that are more unique. However, Sanath and his wife have found an antidote. Not to the condition for their son, but for the loneliness and hopelessness. And it comes down to two simple things. One – Sharing their story. Sanath has chronicled the good, the bad, and the ugly truths about the journey he is taking with his family on his podcast “Raising Rare.” Two – Crowdsourcing for a cure. Sanath has applied his software wizardry to the creation of the Open Treatments Foundation, an open-source software platform to enable treatments to millions of patients worldwide. By unapologetically sharing his story, Sanath is giving others the inspiration to do the same. By sharing these stories and giving people hope are enough to change our industry. And it is change we need. Please subscribe and keep listening to Rare Voices! Listen now: https://www.optimecare.com/rare-voices/category/podcast/ More About Sanath Kumar Ramesh Connect: Sanath’s Linkedin: https://www.linkedin.com/in/sanathkr/ OpenTreatments Foundation Linkedin: https://www.linkedin.com/company/opentreatments/ Resources: Raising Rare Podcast: https://www.raisingrare.fm/ OpenTreatments Foundation: https://www.opentreatments.org/ Sanath Kumar Ramesh Bio Sanath is a bold and visionary software leader, open source pioneer and a rare disease drug developer. In his career, he has built and launched several successful open source software products. He is now using open source software to enable treatments for 400 million patients worldwide affected with rare genetic diseases through his non-profit organization, OpenTreatments Foundation. He is building the world’s first software platform to decentralize drug development and empower anyone in the world to create a treatment for a genetic disease. He is also the father of a 2 year old boy who is one of 9 kids worldwide with an ultra-rare genetic disease called SSMD (curegpx4.org) Music Credits: Westpoint Instrumental by  Sun Shapes
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    52 min
  • S2E4: Dr. Jennifer Mulle, Genetic Researcher

    S2E4: Dr. Jennifer Mulle, Genetic Researcher
    May 9 2021
    In the years that I have worked in health care, I have seen the term “patient first” plastered on so many company websites. More often than not, though, that promise does not hold up when you look under the hood. They say patient first. But what they really mean is: We thought about a mass we call patients. The thing they are missing out on, however, is the powerful results that come from understanding patients as people - whole people. The guest for today’s podcast, Dr. Jennifer Mulle, is the real deal when it comes to patient first. She is a groundbreaking researcher for the rare 3q29 microdeletion and its implications for a number of conditions. But, more importantly, she is someone who has designed her innovative research around intimate understanding of her patients as people with families, with dreams, and with deep questions. I won’t spoil it for you, but her story, like mine, is personal, and her intellect is only outmatched by her heart for serving people. Please subscribe and keep listening to Rare Voices! Listen now: https://www.optimecare.com/rare-voices/category/podcast/ More About Dr. Jennifer Mulle Dr. Mulle Twitter: https://twitter.com/shotgungladys The Emory 3q29 Project: https://genome.emory.edu/3q29/​ Emory Profile: https://med.emory.edu/directory/profile/?u=JMULLE Dr. Jennifer Mulle Bio Dr. Mulle is an Associate Professor in the Departments of Human Genetics and Epidemiology at Emory University. As PI for The Emory 3q29 Project, she leads an interdisciplinary team to understand the phenotypic spectrum, molecular mechanism, and natural history of 3q29 deletion and 3q29 duplication syndromes. Music Credits: Westpoint Instrumental by  Sun Shapes: https://www.marmosetmusic.com/artists/sun-shapes
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    40 min
  • S2E3: Jeffrey Miskoff, Critical Care Physician

    S2E3: Jeffrey Miskoff, Critical Care Physician
    Mar 29 2021
    The past year has shaken so many of us to our core. I remember, about a year ago, sending everyone home from our offices at Optime Care. And everything felt uncertain. When could we bring people back? What about our patients? They count on us…daily. How will COVID-19 impact them? Not just their health, but their access to other care givers? I went back to my office and fired up my computer. On my LinkedIn feed, there was a familiar face. One of my most respected friends had posted a video he called “A Concerned Doctor.” I hit play. And, in the midst of chaos, I felt like I had found a confidant and ally. Here was someone on the front lines, caring for patients, and doing the most important work a physician can do – adding a voice of reason to an otherwise turbulent time. Over the past year, I have kept my friend, Dr. Jeffrey Miskoff, pulmonologist and critical care physician, as a constant presence. A good portion of his patients also have rare conditions, and it is why this episode is so important for anyone connected to the rare and orphan patient communities. His story over the past year involves loss, heartache, hope, and victories. It has something for you no matter where you are in the spectrum of patient care, and, as with all of our episodes this season, it has an outlook for where health care is going next. Please subscribe and keep listening to Rare Voices! Dr. Jeffrey A. Miskoff, D.O. Bio Dr. Miskoff specializes in Critical Care Medicine, Pulmonary Medicine and Sleep Medicine. He completed his Residency at Philadelphia College of Osteopathic Medicine and Fellowship at Beth Israel Medical Center. Dr. Miskoff specializes in rare disorders such as Alpha-1 Antitrypsin Deficiency and narcolepsy. He also hosts his own video series on YouTube called, “A Concerned Doctor”, where he discusses the COVID-10 pandemic, treatment, and concerns around the virus. Subscribe here: iTunes   •   Soundcloud   •   Stitcher    •    Youtube Music Credits: Westpoint Instrumental by  Sun Shapes
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    53 min
  • S2 E2: Jessica Ballinger, Rare Disease Caretaker and Influencer

    S2 E2: Jessica Ballinger, Rare Disease Caretaker and Influencer
    Mar 15 2021
    Almost all of us in the world of rare and orphan have one of these stories. For me, it was my father and my family, of course. But, almost without exception, everyone I know who is leading an effort to improve the lives of people with rare or orphan conditions has had a catalytic moment with a patient. Maybe it was during clinical trials or at a patient advocacy meetup or even your neighbor, but, at some point, you got to know someone as a person. You learned about their humanity, their aspirations, their families. And that is what led you to working with those populations. And why you listen to a podcast like this one. If, perhaps, you have forgotten what that moment was like for you, we have something very special for you in this episode. This is the story of Jessica Ballinger’s family. And this story will remind you what your first time was like. Because this episode is the up-front, raw, and unfiltered voice of a parent in the midst of developing the best possible futures for all her kids — including a toddler with a rare condition. You may know Jessica or, at least, you may know about various members of her family. Nearly each one of them has achieved their own level of notoriety on YouTube or comedy shows. But, today, we are getting a rare, behind-the-scenes look at what it takes to be a mother of a child with a rare condition. Pay close attention to her courageous point-of-view and how she is guiding her family forward one day at a time. Jessica Bio: Jessica Ballinger and her husband, Chris Ballinger, run a family and lifestyle channel on YouTube. They create content across multiple platforms, including Instagram, TikTok, and Twitter. They homeschool their five children, ages 1-13, together and love to share their parenting experiences. They also recently started a podcast called, “Let’s Talk About What We Learned Today”, where they discuss family matters and relationships. Music Credits: Westpoint Instrumental by  Sun Shapes
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    33 min
  • S2E1: Steve and Beth Aselage, BioPharma Experts

    S2E1: Steve and Beth Aselage, BioPharma Experts
    Feb 26 2021
    One of our guest we bring you in this episode is a self-described industry dinosaur. The reason he can make a claim like that, of course, is his longevity. But also, perhaps without knowing it, he can make that claim because of the long-term impact he has had on health care. In fact, if you look back over the past 30 years of pharmaceuticals, you can see his fingerprints on so many of the advancements that we take for granted today. This dinosaur is Steve Aselage. He is a member of the board of directors of Travere Therapeutics where he previously was CEO. He is joined on this episode by his daughter, Beth Aselage, Associate Director of Advocacy Relations for Gossamer Bio. Beth speaks with a wisdom that combines analytical insights with an abiding desire to advocate on behalf of patients. She has a unique ability to harvest what is most important to patients and to fuse them into an ongoing development for pharmaceutical companies. Of course the insight that they offer is second-to-none. However, we wanted to bring you the two of them together for an even bigger reason. We wanted you to know about the depth of the legacy that a passion for serving patients can have. When that passion is more than just a saying, patient-first mentalities have the power to change our industry for years to come. Please subscribe and keep listening to Rare Voices! Music Credits: Westpoint Instrumental by  Sun Shapes
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    42 min