Raise the Line

Grace Wilsey was born with a deadly genetic mutation so rare that at the time of her birth, it had never been identified in another person. The disorder, NGLY1 deficiency, causes a wide range of physical and cognitive problems such as muscle weakness, speech deficiencies and seizures. “The NGLY1 gene is in every cell in the body. It's almost like a firefighter that's on call, ready to go when there's a problem. Without it, the cell just kind of overwhelms itself with stress and starts to die,” explains Matt Wilsey, Grace’s father, who joins us on this episode of Raise the Line to talk about the daunting journey he and his family have been on since Grace was born in 2009. That journey involves starting a foundation and biotech company that’s fueling research on NGLY1 deficiency which could have an impact on more common diseases such as cancer, diabetes and Parkinson's. The researchers the Grace Science Foundation supports include several Nobel laureates whose work is providing reason for optimism. In fact, Matt says they hope to start a clinical trial in early 2023 to study a gene therapy that has shown promise in animal testing.  Listen to this fascinating conversation with host Shiv Gaglani to learn about the race with time to unlock the secrets to a gene that is fundamental to human life. Mentioned in this episode: https://gracescience.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

“You know, it's easy to say that default answer that everything's okay, but it's really not. She's lost a lot of her vision, she's got hundreds of seizures at night, and she's having difficulty walking,” shares Luke Rosen about his eight-year-old daughter Susannah.  She was born with KIF1A-associated neurological disorder -- or KAND -- a rare, degenerative genetic disease for which there is currently no cure or treatment.  On this episode of Raise the Line, Luke talks about how he and his wife Sally summoned the strength to move beyond their family’s own challenges to create KIF1A.org which is working to rapidly discover a treatment for all patients and families affected by this devastating disorder, but to also create a supportive community.  “Five years later, we have approximately four hundred families around the world that we've identified and there's not one family I know that doesn't play a significant role in what we do.” Thanks to that global community and partnerships with the Chan Zuckerberg Initiative, Columbia University, the n-Lorem Foundation, the Jackson Laboratory and many other organizations, there’s reason to be hopeful, as Luke shares with host Shiv Gaglani. “Susannah has been fortunate enough to just have started an experimental treatment. We really are on the brink of several things for, hopefully, the entire community.” Tune in for a candid and moving look at how families and supportive scientists and healthcare providers are mobilizing to fight back against a rare and pernicious threat to their children.Mentioned in this episode: https://www.kif1a.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 we continue our focus on rare diseases on Raise the Line, we’re delighted to be joined by Dr. Alaa Hamed, Global Head of Medical Affairs, Rare Diseases at Sanofi, one of the leading pharmaceutical companies in the world. Although most well known for their focus on lysosomal storage disorders including Gaucher and Pompe disease, Dr. Hamed and his team at Sanofi are also working in adjacent disease spaces depending on the systems affected. “For example, the lysosome in Pompe disease affects the neuromuscular tissues, so we have a neuromuscular disorder interest as well.” In their discussion, Dr. Hamed and host Shiv Gaglani also touch on the efforts Sanofi is making to shorten the diagnostic odyssey for rare disease patients, including building more disease awareness and greater global infrastructure.  “From the inception, we thought that having universal access is a key part of the rare disease equation.” You’ll also learn about the challenges of drug development, the importance of maintaining policy incentives to focus on rare diseases, and where innovation is needed most to advance outcomes for patients. Mentioned in this episode: https://www.sanofi.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

“Imaging has really become the tip of the spear of the patient journey,” says Daniel Arnold, CEO of Medality. In order to train future radiologists in this critically important and complex specialty, and keep current practitioners on top of their game, Arnold and his team are on a mission to transform the way radiologists learn by offering an online solution that mimics practicing radiology in the field.  “Our goal is to make it easy for radiologists to learn a new subspecialty in just five minutes per day.” In his conversation with host Shiv Gaglani, Arnold touches on how Medality (formerly MRI Online) is connecting radiology practices with people who have the skills they need most. The two also discuss the importance of getting imaging diagnoses correct the first time, why radiologists can't just rely on what they learned in residency and fellowship, and the impact of artificial intelligence and other technological advances in the field. “Being a part of the puzzle around how we disseminate new lifesaving technologies is what really motivates us and gets us excited.”Mentioned in this episode: https://mrionline.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

“One of the reasons I really wanted to be at Walmart is that you're touching people that truly have a need,” says Dr. John Wigneswaran, the retail giant’s Chief Medical Officer.  And giant is not an overstatement.  150 million Americans visit a Walmart every week, and there is a store within ten miles of 90% of the U.S. population.  In terms of healthcare, there are roughly 5,000 Walmart pharmacies, 4,000 of which are in medically underserved areas.  Walmart visitors also have access to primary and urgent care, labs, x-ray and diagnostics, behavioral health, dental, optometry and hearing services.  So, clearly, the company is in a unique position to make a big impact in the healthcare space whatever they choose to do. One of their most recent choices is to boost the participation of rural and underserved communities in clinical research, which Dr. Wigneswaran sees as an extension of their existing mission. “Ultimately, what we're trying to do to is drive safer, high quality and equitable care, and research is just one of the levers,” he tells host Shiv Gaglani. Tune in to learn about the evolution of a growing player in America’s healthcare system which could include initiatives in diabetes, nutrition education, wound care and HIV.Mentioned in this episode: Walmart Health and Wellness 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’s not hard to start feeling relaxed when you experience a virtual reality visit to a mountain top, taking in the beautiful views of forested peaks and valleys and hearing the rustling breeze. You can actually feel transported from the real world.  But imagine how much more transporting it would be if you could also smell the pine trees? Well, now you can, thanks to OVR Technology, a Vermont-based company that has overcome substantial technical challenges to seamlessly add scent to the VR and AR experience. “Research has shown quite directly that adding sense of smell to VR tangibly increases presence and immersion and the key factors that everybody is looking for when they experience a VR environment,” says neuroscientist Dr. Rachel Herz, the company’s chief scientific adviser.  And because not everyone has positive associations with scents from the real world, says CEO Aaron Wisniewski, OVR is creating new ones to facilitate the therapeutic impact of the scented VR experience. Both stress that the applications for the technology go well beyond recreational use, and the units are already being deployed in clinical settings with one study showing a major -- and lasting -- drop in levels of pain, stress and anxiety among inpatients after doing just a few short sessions with the OVR headset per week.  Don’t miss this fascinating conversation with host Michael Carrese as we explore how OVR’s groundbreaking technology is adding a powerful new dimension to the virtual world.Mentioned in this episode: https://ovrtechnology.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

“We're the richest country on the planet, healthcare access has to be core to who we are,” says Karthik Ganesh, CEO of EmpiRx Health, one of the fastest growing healthcare services companies in the country and the industry’s only value-based Pharmacy Benefit Manager.  Ganesh and his team believe that radical changes are needed in the country’s healthcare system and they’re working to create a better experience for patients, providers, businesses, and insurance companies alike.  Ganesh has deep experience in the healthcare insurance industry and health data management with stops in his career at Aetna, Express Scripts and Deloitte, and he's also the author of The Happiness Model: A Roadmap to Inner Peace. In his conversation with host Michael Carrese, Ganesh talks about why employers need to learn more about value-based care, and how healthcare needs to become a less transactional relationship with the provider.  He also touches on some of the key factors that make EmpiRx different from traditional PBMs. “We are as equally focused on health outcomes as we are financial outcomes.” Mentioned in this episode: https://www.empirxhealth.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

Would you rather be poked with a needle, or get a diagnosis from a non-invasive scan? Most of us would choose the latter, if we had the option.  Needle biopsies also come with the risk of infection and other complications that can be avoided by obtaining a diagnosis via imaging. Those are just some of the advantages underpinning the work of Perspectum, a global precision health company focused on improving the diagnosis, treatment, and management of metabolic diseases and cancer.  As founder and CEO Dr. Rajarshi Banerjee explains to host Michael Carrese, “I can work out with incredible clarity what kind of prostate cancer someone has, and what treatment they're likely to respond to, just from a scan.” Other applications include diagnosing and monitoring liver disease, and more recently, doing multi-organ scans to aid in evaluating long COVID.  Banerjee also sees a role for Perspectum’s computer-assisted imaging technology in combatting the rising tide of chronic disease in the U.S. “Unless we do something about them, there is going to be a fourfold rise in breast, colon and liver cancer in the next two decades.”  Check out this enlightening look at new tools to help providers customize treatments and provide better care for patients. Mentioned in this episode: Would you rather be poked with a needle, or get a diagnosis from a non-invasive scan? Most of us would choose the latter, if we had the option.  Needle biopsies also come with the risk of infection and other complications that can be avoided by obtaining a diagnosis via imaging. Those are just some of the advantages underpinning the work of Perspectum, a global precision health company focused on improving the diagnosis, treatment, and management of metabolic diseases and cancer.  As founder and CEO Dr. Rajarshi Banerjee explains to host Michael Carrese, “I can work out with incredible clarity what kind of prostate cancer someone has, and what treatment they're likely to respond to, just from a scan.” Other applications include diagnosing and monitoring liver disease, and more recently, doing multi-organ scans to aid in evaluating long COVID.  Banerjee also sees a role for Perspectum’s computer-assisted imaging technology in combatting the rising tide of chronic disease in the U.S. “Unless we do something about them, there is going to be a fourfold rise in breast, colon and liver cancer in the next two decades.”  Check out this enlightening look at new tools to help providers customize treatments and provide better care for patients. Mentioned in this episode: https://www.perspectum.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

“We know that whenever nurses are listened to in policymaking arenas, health outcomes improve,” says Dr. Michelle Acorn, chief nurse at the International Council of Nurses, a federation of nursing associations. That’s why she’s focused on making sure nurses are at the decision-making tables all over the world. “ICN ensures that nurses have a voice in developing and implementing health policy so that we can meet the real needs of patients, families and communities.” Acorn makes a point of getting into the decision-making arena herself, including at the recent United Nations General Assembly meeting in New York where she raised awareness of health disparities. “Our health systems need resources to provide patient- centered and culturally-appropriate care to the diverse populations we serve,” she tells host Michael Carrese. Tune in for a wide-ranging exploration of current global trends and challenges in nursing, lessons from COVID-19, and major leadership opportunities in the nursing profession. Mentioned in this episode: https://www.icn.ch/ 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

Science As a Force for Social Good: Dr. Richard Horton, Editor in Chief of The Lancet The first scientific paper on the clinical features of patients infected with what came to be known as COVID-19 was published in The Lancet, launching that famed journal's prominent role in COVID research, which it has maintained throughout the pandemic. But being an influential force in science and medicine is nothing new to this nearly 200-year-old publication, which is published by Osmosis' parent company, Elsevier.  We explore that role on this episode of Raise the Line with The Lancet’s Editor in Chief, Dr. Richard Horton. A physician by training, Dr. Horton himself has often been described as a global force in science and medicine, partially for his work in greatly expanding the content offerings and global reach of The Lancet’s family of publications, but also for his outspokenness on politically charged issues. “I don't apologize for not being impartial. I would say it's the only way you can be. You have to look at the world, diagnose the world view you have, and then we use our journal to try and achieve certain objectives. It's what science was all about originally,” he tells host Shiv Gaglani.  Insights abound in this penetrating and lively look at the intersection of science and society, what lessons we should learn from COVID and the prospects for humans solving the existential threats we’ve created. “Our role at The Lancet is to draw attention to the dangers that face the human species, but also, to the solutions that are available to us.”Mentioned in this episode: https://www.thelancet.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