Raise the Line

It was on a Friday the 13th in late winter 1997 when John Crowley’s life changed forever.  John and his wife Aileen had been noticing concerning symptoms in their infant daughter Megan for several months, and after a few rounds of testing she was diagnosed with a rare form of muscular dystrophy known as Pompe disease.  Doctors told the Crowleys their daughter likely only had a few years to live, an outlook that ultimately sparked John’s remarkable efforts to find treatments for Megan as well as her younger brother Patrick, who was also struck with Pompe. His family’s amazing journey was the inspiration for the movie Extraordinary Measures starring Brendan Fraser and Harrison Ford.  Join host Shiv Gaglani in this captivating and inspiring conversation with Crowley, now the Executive Chairman at Amicus Therapeutics, to learn about how he and his team are shedding light on some of the rarest diseases in the world, the promise of new technology in genetics, and the need for an Operation Warp Speed to develop rare disease treatments.  As Crowley puts it, “We can beat nature, we think, in the years and decades ahead. We just oftentimes have to beat time.”Mentioned in this episode: https://amicusrx.com/ If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Direct-to-consumer healthcare and how technology can empower people to be active participants in achieving and maintaining their own good health is a favorite topic on Raise the Line.  Today we’re going to take a closer look at how one consumer health device that’s growing sharply in popularity, continuous glucose monitors, can be used to drive healthier decisions.  Millions of Americans wear the devices to see the impact of what they eat on their bodies, but it can be difficult for people to use that information.  That’s where Levels enters the picture, a health tech company helping people discover how diet and lifestyle choices impact their metabolic functioning.  “We're enabling people to better understand what health decisions they should be making,” says Dr. Taylor Sittler, the company’s Head of Research and Development. Levels does that through an app that presents data from the monitors in a way that people can understand.  For example, you can see a chart showing your glucose levels over the course of the day.  Next up for Levels is supporting people as they act on the information, and providing data on exercise and sleep. Join host Michael Carrese as he explores this growing area of medical technology with Dr. Sittler, and how measuring and monitoring resilience can also play an important role in improving health.Mentioned in this episode: https://www.levelshealth.com If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Unlike many young children who are fearful of visits to the doctor, Dr. David Canes was fascinated by his.  This early interest set the foundation for a career in medicine, leading him to become a skilled urologist and robotic surgeon. But he started to feel unsatisfied with the repetition of information he needed to deliver during patient appointments. “I think there's a lot of other doctors like me who really love making a connection with another human being who needs your help, but if you are repetitively explaining things, you enter an autopilot type of mindset and it really bothered me a lot.” Ultimately, the patient-centered solution he developed grew into the company Wellprept, which empowers doctors to curate educational content that can easily be shared with patients before appointments via a single link.  Happily, it’s working well for both the physicians who are using the system and their patients. “The "ah-ha" moment seems to be that the patient comes back in and says, ‘thank you so much for sending me that,’ and then the provider notices that the visit is better.” Check out this wide-ranging conversation with host Shiv Gaglani, in which Dr. Canes shares his insights on other ways to reduce physician burnout, thoughts on improving the doctor-patient relationship, and tips on planning for a long-term career in medicine. Mentioned in this episode: https://wellprept.com If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

There’s good news in the world of organ donation and transplant.  For the first time last year, more than 40,000 transplants were performed in the U.S. and donations from deceased donors increased for the eleventh year in a row. And as we’ll learn from today’s guest Leslie McMahon, newer technologies are making it possible to evaluate organs for viability that previously might have been rejected due to concerns about trauma-inflicted damage or other factors. “They can put the heart in a box and watch its function outside of the body before implanting it. They have the same devices for liver, kidneys and lungs as well.” McMahonis Organ Recovery Manager at Donor Alliance, an organ, eye and tissue  procurement organization serving Colorado and parts of Wyoming, one of 57 OPOs in the United States dedicated to helping the 106,000 Americans in need of transplants. “Our vision is to maximize all donation opportunities. We are really focused on performance improvement to be able to meet that vision.” Don’t miss this informative conversation with host Shiv Gaglani in which McMahon shares her insights on the challenges of procuring organs for donation, the special connection developed with donor families, and why having a positive attitude is essential in growing a career in the healthcare field.Mentioned in this episode:https://www.donoralliance.org/https://www.donatelife.net/ If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Inspired by her own challenges with fertility a few years ago, serial entrepreneur Halle Tecco saw a tremendous opportunity to rebuild the fertility and pregnancy experience for families from the ground up. She wanted to bring a human-centered approach to physical products that were largely designed and sold by male-owned incumbents in the space. She came home one day after interviewing a few potential CEOs and told her husband, "I'm so sorry. I know I said I wouldn't start a company, but I think that I have to do this, I'm just so passionate about it." With those words, Halle founded Natalist to offer fertility and pregnancy essentials for women and men who wanted a better solution, just like her. The company was acquired in October of 2021 by Everly Health where Halle now serves as vice president, focusing on developing and supporting women’s health strategy across the organization. Check out this episode of Raise the Line as host Shiv Gaglani sits down with Halle to hear all about her journey as an entrepreneur in the healthcare space, and discuss the many obstacles and challenges women still face navigating the healthcare system today. If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Victoria Repa has known from her earliest days growing up in Ukraine how difficult it can be to lose weight. “In my family, everyone is overweight. It's our family problem and we can't overcome it.” Breaking that cycle provided Repa with the motivation to start her own journey toward better health, but she wanted to help others find their own motivation as well, and sustain it. Armed with business degrees from Kyiv University and Stanford, she launched the tech company BetterMe five years ago whose apps have already been downloaded 110 million times. Keeping that level of success going would be a challenge in any circumstances, but especially during the War in Ukraine which has required some staff to flee the country while others stayed to fight. Join host Michael Carrese for this inspirational conversation with a tenacious leader who is fighting for her country, her employees and the health of her customers all at once.Mentioned in this episode: https://u24.gov.ua/ to support the people of Ukraine. If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

It was a decade after NY Giants great and Super Bowl champion Leonard Marshall retired when he first started to notice cognitive issues and a concerning change in attitude. Five years, many doctor visits and countless hours of research later, the two-time Pro Bowl defensive lineman received a diagnosis of CTE, or chronic traumatic encephalopathy, a degenerative brain disease that’s common in former NFL players. He estimates taking over 30,000 blows to the head in his entire college and pro football career, which included 12 years in the NFL. “I knew what I signed up for when I started to play pro football. I knew there was a very strong chance I could end up getting a knee injury, back injury, neck injury, maybe a concussion or two.  But nowhere in that fine print did it say you could end up with chronic traumatic encephalopathy, and no one ever talked about it.” Today, Marshall is using his high profile to support CaringKind, New York City's leading expert on Alzheimer's and dementia caregiving with a forty-year history of working with community partners to help affected patients and families.  Join host Shiv Gaglani for this touching opportunity to hear a patient’s perspective on a disease that is constantly in the headlines, and learn what Leonard Marshall is doing to support people facing the same reality.  Mentioned in this episode: www.caringkindnyc.org If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

“I knew I wasn't going to survive unless I found a drug that could save my life,” says Dr. David Fajgenbaum, who has almost died five times from the rare disorder idiopathic multicentric Castleman disease, which he developed while in medical school. Now a physician and assistant professor at the University of Pennsylvania, Fajgenbaum has led research efforts into a cure for Castleman, discovering a drug that has kept him disease-free for eight years and is helping other patients. As he continues pursuing new therapies for Castleman, Fajgenbaum is also spearheading an effort to create a system for identifying alternate uses for existing drugs, something which could benefit millions in the rare disease community and beyond. “One of my favorite examples is tocilizumab, which was made for Castleman in the 1990’s and is now the first drug you'll receive if you're admitted to the ICU with COVID,” he tells host Shiv Gaglani.The non-profit effort is being announced this month at a Clinton Global Initiative meeting. Don’t miss this deeply inspiring conversation with many lessons on the importance of collaboration, laughter and hope, and the perspective gained from feeling like you are living on borrowed time.  Mentioned in this episode: www.chasingmycure.com If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

On this special episode of Raise the Line, we get an eyewitness account of how medical needs are being met in the midst of the war in Ukraine from Ukrainian-American anesthesiologist Dr. Oleg Turkot, who has been coordinating resources and treating patients since the war started. As he tells host Shiv Gaglani, one important focus for him has been working with the Butterfly Network to distribute hand-held ultrasound devices. “If you have an ultrasound that weighs sixty pounds, lugging that as you're fleeing from a rocket attack ends up not really being your best priority versus something that you have on your belt.” Dr. Turkot is not new to improving medical care in under-resourced countries. For years, he’s been working with Kybele, an organization that creates healthcare partnerships across borders to improve childbirth safety.  Tune in to this fascinating and important conversation to hear more about that work, how Twitter can be a powerful resource in crowdsourcing medical devices, and about some of the unique differences between the healthcare systems in the United States and Ukraine. “I think the most important thing is to continue to support organizations that are doing the work on the ground because this is going to have to continue for years.”Mentioned in this episode: https://kybeleworldwide.org/https://www.butterflynetwork.com/  If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

When Akiva Zablocki found out his infant son Idan had a one-in-a-million immune disorder, he and his wife Amanda were terribly worried, as all parents would be. But unlike most parents of children with rare diseases, Akiva could draw on the expertise in navigating the healthcare system he gathered when successfully overcoming his own rare and scary ordeal with a brain stem tumor. Thanks to that know-how, his wife’s background in healthcare law, some amazing clinicians, the couple’s tenacity, and Idan’s spirit, he is now a healthy ten-year-old enjoying summer camp. On this episode of Raise the Line, Akiva shares the remarkable details of his family’s journey with host Shiv Gaglani, and tells the story of how the Hyper IgM Foundation, which the Zablockis launched, is helping patients all over the world. Be sure to stay tuned for some heartfelt advice for current and future providers as they encounter patients and families with rare diseases. Mentioned in this episode: https://hyperigm.org/ If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast