Raise the Line

Just a few weeks ago we shared the story of John Crowley’s family and their battle with Pompe disease on Raise the Line, and in this episode, we’re honored to share another remarkable story of a rare disease parent and the contributions they've made beyond their efforts to help their own loved ones.  Nick Sireau is the CEO and Chair of Trustees of the AKU Society, an award-winning patient group that helps people with Alkaptonuria (AKU), sometimes referred to as black bone disease, a rare disorder affecting both of his children. In AKU patients, a build-up of acid in the body leads to a painful breakdown of bones and joints, and serious heart complications. Nick’s tireless efforts have led to some extraordinary results, including making the very first treatment for AKU available.  Nick is also Founder and Chair of Orchard, a medical charity that works to develop new and better treatments for obsessive-compulsive disorder (OCD), a misunderstood mental illness that Nick has battled for many years. Join host Shiv Gaglani for a fascinating look at the impact one parent has had on the welfare of so many, and for advice for those weighing career options in the healthcare field.  “There are hundreds, if not thousands of these ultra-rare diseases that just nobody is touching.”

Mentioned in this episode:

https://akusociety.org/
https://www.orchardocd.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

As Dr. Katie Kay reflects on what adjustments need to be made to nursing curricula in light of the pandemic, she is not focused mainly on academic content. “We have to address some gaps in curriculums across the board that really prepare individuals for what they're going to encounter in the healthcare setting.” Assessing grit, making sure students seek out resources when they are struggling and adding resilience and wellness training to the mix are top-of-mind examples. As University Dean for West Coast University College of Nursing, Kay is able to impact learning for thousands of students in the largest states in the country where the pandemic has left demand for nurses at an all-time high. In this wide-ranging conversation with host Shiv Gaglani, Kay touches on ways the nursing field can reduce burnout, and gives her opinion on how to successfully implement new technology in the healthcare system.  She also speaks about ways the pandemic caused a shift in student expectations around education,the need for faculty to center themselves to best serve students and why hospitals should view nursing as an operational expense versus a billable service.  Don’t miss this chance to learn about current and future challenges and opportunities in nursing education.  

Mentioned in this episode: https://westcoastuniversity.edu

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 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

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