Raise the Line

2024 is the year today’s Raise the Line guest, Michelle Hughes, is supposed to die. That’s according to the diagnosis she received three years ago from an oncologist who told her she had a rare, incurable form of cancer that had already caused innumerable tumors throughout her body.   As a mother of three – with her youngest child being just a few weeks old at the time of her diagnosis – this was obviously devastating news.  But fortunately, the optimism and encouragement of a second oncologist allowed for a new path forward. “It changed my entire world when that one doctor had hope,” she tells host Lindsey Smith.Fueled by the advice of her new doctor “to just live your life” Michelle embraced a healthy lifestyle that includes distance running, including a recently completed triathlon. She has also embraced the role of empowering others to face their challenges through “My Journey to Just Live” an organization she created that keeps her busy doing a blog, social media posts, speaking engagements fundraisers and other activities. Join us for a special edition of our Year of the Zebra series focused on rare diseases to learn about Michelle’s challenging journey to motherhood, being a parent to three young children, and living with terminal cancer. “I remind my children and myself that cancer doesn't define me. I'm so much more than that.”For information on the November 16th online premiere of a documentary about Michelle’s story, visit My Journey to Just Live 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/raisethelinepodcast

What good are dazzling advancements in science – such as the rapid development of an effective COVID vaccine – if public distrust of science and medicine leads people to reject them?  That’s the sort of question animating the work of today’s Raise the Line guest Dr. Kathy Reeves, president and CEO of the Arnold P. Gold Foundation. A key part of the answer, Reeves believes, is to increase the level of humanism in healthcare, defined as providing kind, safe, trustworthy care. “Humanism in healthcare is the vehicle to allow science to make an impact, and it is what is needed to change a broken healthcare system,” she tells host Caleb Furnas. Her conviction is based on numerous studies showing that patients who feel heard, understood, and treated with empathy by their healthcare providers report higher satisfaction levels and improved quality of life. The approach boosts provider satisfaction and lowers costs as well. “There's more science in the value of humanism than in many of the things I learned almost thirty years ago when I was a pediatric resident.” Tune in to this insightful episode to discover what providers can do in less than a minute to create a connection with patients, what Reeves and the foundation are doing to support providers who want to incorporate humanism into their practice, and how the White Coat ceremony got started. Mentioned in this episode: Arnold P. Gold Foundation 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/raisethelinepodcast

We've learned quite a bit on Raise the Line about the growing trend of providing medical care in the home, particularly as it relates to services enabled by advances in remote monitoring technologies. In this episode, we’re adding to that base of knowledge by focusing on what's happening with in-home physical therapy services. Our guide will be Palak Shah, PT, the co-founder and head of clinical services at Luna, a leading provider of in-home physical therapy that has completed one million patient visits in twenty-eight states since its founding in 2019. “Our patients appreciate this option so much because there are so many hurdles to access -- time constraints, ability to come to a clinic, the cost of travel, the dependency on family and caregivers -- and Luna eliminates all of that,” Shah tells host Michael Carrese.  The company has also focused on convenience for its 3,000 licensed providers through developing an app that integrates documentation, care coordination, billing, scheduling and other administrative tasks. But can you actually provide high-quality care for a full range of patient needs in what might often be small spaces? Based on data from its patient population in Southern California, Shah says Luna found that 87% of people can be seen in the home because large pieces of equipment are not needed to provide the required treatments. Tune in to learn how the services are paid for, how the system works for the hospitals and practice groups the company partners with, and what Luna’s providers say about working in the home environment.Mentioned in this episode: Luna 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/raisethelinepodcast

Over a long and very active career as a researcher, clinician and educator, Dr. Nicholas Talley has witnessed the traditional mind/body dichotomy fade in relevance as science has determined just how integrated they really are. “The body talks to the mind, the mind talks to the body, and we're exploring how this happens and what we can do to interfere, if you like, to make a difference and perhaps restore health by doing so,” he says. Dr. Talley, a distinguished laureate professor at the University of Newcastle in Australia, is an international authority in the field of neurogastroenterology with more than 1,000 peer reviewed publications. Much of his work centers on disorders of gut-brain interaction, including functional dyspepsia, irritable bowel syndrome, and GI complications in diabetes. “What keeps me going is this idea that gut-brain connections are going to be very important, not just in gastrointestinal diseases, but in fact in many diseases that affect people across the spectrum of internal medicine.” Join Raise the Line host Caleb Furnas for a fascinating look at this burgeoning field as well as insights on probiotics, possible pharmaceutical interventions on the horizon and how artificial intelligence is impacting medical education. Mentioned in this episode:University of Newcastle 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/raisethelinepodcast

Today’s Raise the Line guest provides a great example of how to embrace the range of career options that are available to medical practitioners. In the dozen years since earning his medical degree, Dr. Andres Acevedo-Melo has been a medical liaison and advisor for two of the largest pharmaceutical companies in the world, provided recruitment support for clinical trials, and been an editor with a publisher of open access journals. He also spent two years as a student leader in our Osmosis Medical Education Fellows program. “You might have a plan for your whole medical career, but you can also have alternatives. Consider your life like a stack of possibilities where you can choose one, but if you get detoured from that path, you can learn something from that,” he tells host Michael Carrese. Dr. Acevedo-Melo, who just finished an internal medicine residency program at Fundación Santa Fe de Bogota, also discusses his interest in coaching as a tool to improve the leadership skills of providers. “I think we can use coaching to help our students and our colleagues know themselves better so they can try to identify what leadership style they should use to get results. Because at the end, if we are benefited, our patients will also benefit so it would become like a snowball effect.” Don’t miss this engaging interview that offers insights on the use of AI in clinical trial recruitment, why providers need to prioritize their mental health, and the connection between golfing and effective leadership as our NextGen Journeys series continues.Mentioned in this episode:Fundacion Sante Fe de BogotaPLOS ONE Journal 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/raisethelinepodcast

“I thought that education and medicine was a pathway for me to not only get out of my small town but to also make a huge impact somewhere in the world,” says Jermaine Blakely, a third-year medical student at Howard University College of Medicine. But Blakely didn’t wait for medical school to start making a difference. While an undergrad at Morehouse College, he created a program that paired students with local churches to help the homeless, as well as women who were victims of domestic violence. Although he was pre-med at Morehouse, his path to medical school included detours to get a Masters in Health Policy and Management at NYU and several years working in healthcare IT at hospitals in the San Francisco Bay area, giving him a broader perspective than his younger classmates on the opportunities before them. “I think we're asking the wrong question to medical students. Instead of asking what they want to specialize in, we should ask ‘what do you want to do with your medical degree’ because I think your degree should be a passport to many different career paths.” Possibilities for Blakely include creating a medical device company, joining a venture capital firm or maybe falling in love with a specialty and having a clinically-focused career. Regardless, there’s little doubt we will be hearing about his positive impact in the years ahead. Don’t miss meeting this inspirational young leader as our NextGen Journeys series continues. Howard University College of Medicine 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/raisethelinepodcast

One way to look at today's guest is that if he were a zebra, he would have extra stripes because, unfortunately, he has more than one rare condition, which is a first for a guest in our Year of the Zebra series. After struggling with various GI issues most of his life, Brian Kennedy, an Elsevier colleague, was diagnosed several years ago with exocrine pancreatic insufficiency (EPI), a rare disorder that prevents the pancreas from playing its proper role in aiding digestion. At the same time, he was told he had MALS, another rare condition, that interferes with blood flow in the abdomen. Both of these disorders can cause chronic pain in addition to a host of other difficult symptoms. While it was a relief to finally have answers, Brian says it also sparked a long period of grief. “You start to realize your life is not going to go back to the way you had it, but you just have to accept it and then you sort of think about the things I can do and focus on those and not the things that I can't do anymore,” he tells host Michael Carrese. That shift in perspective and connecting with a community of other EPI and MALS patients has helped Brian to stay as positive as possible and focus on being as healthy as he can under the circumstances. Listen-in to learn about these challenging diseases, the therapy that is helping Brian eat without subsequent debilitating pain and his advice to providers about dealing with rare disease patients. Mentioned in this episode:Primal Pancreas by A. ToxopeusMission Cure 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/raisethelinepodcast

“If you really want to build a relationship with your patients, a model based on insurance doesn't enable you to spend enough time with them to build that connection,” says Dr. Ginamarie Papia, a practitioner of integrative medicine based in New York. That explains why the 30-something entrepreneur has just launched her own virtual “direct-to-patient” medical practice that she describes as a more affordable version of the concierge model. The move reflects frustration among providers of her generation with the confining, administrative approach to healthcare delivery that’s contributing to high levels of burnout, and their desire for a better work-life balance.  It also reflects a realization that millennials and subsequent generations are digital natives who grew up in a culture with high expectations for convenience.  Dr. Papia tells host Michael Carrese that her primary care practice will provide natural, holistic solutions with a particular focus on weight loss and women’s health, including options beyond birth control medication for younger women struggling with hormone or menstrual cycle issues. Join us for a grassroots-level look at evolving models of healthcare delivery, the benefits of integrative medicine and the role of social media in providing patient education. Divinely Guided HealthThe Upward Spiral Podcast 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/raisethelinepodcast

As we continue our Year of the Zebra focus on rare disorders, we’re going to focus on the productive relationships that can develop between the families of children with rare diseases and the researchers who are trying to develop treatments and cures.  Join Raise the Line host Lindsey Smith as she explores the various dimensions involved with Jennifer Wells, whose young son has a neurodevelopmental syndrome called CAGS (Chopra Amiel Gordon Syndrome) and her son's physician, Dr. Maya Chopra, a clinical geneticist who co-discovered the gene in question and who is leading an international study on CAGS. “It's so important as researchers that we engage and include families in our research design and methodology so we understand what are the most relevant and meaningful endpoints that we're going to use for trials,” explains Dr. Chopra, director of Translational Genomic Medicine at the Rosamund Stone Zander Translational Neuroscience Center at Boston Children’s Hospital. In turn, family members can be a critical connection to the tightly-knit communities that grow up around specific disorders which are eager for the latest information. “As materials become available from Dr. Chopra and her research team, then I try to partner with them to get it out to the community and have those resources available,” says Jenifer. Tune in to this fascinating discussion to learn about other benefits of these relationships, what’s happening in CAGS research, and an approach to research being pursued by Dr. Chopra that will help make small studies more scalable, potentially benefitting multiple conditions at once. Mentioned in this episode:Rosamund Stone Zander Translational Neuroscience Center 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/raisethelinepodcast

In 2010, our guest, Rob Long, was on the cusp of an NFL career after being a star punter at Syracuse University. But that bright future was sidelined when Rob was diagnosed with a rare and aggressive brain tumor just five days after his final college game. Fortunately, emergency surgery and treatment gave him a second chance. As you’ll learn in this fascinating episode of Raise the Line, a new purpose took the place of his NFL dreams and today he's the executive director of Uplifting Athletes, a nonprofit using sports to raise awareness and resources for rare diseases. One signature program developed under his leadership is the Young Investigator Draft held annually since 2018 at the home stadium of the Philadelphia Eagles. “Our program is modeled after the NFL draft, but instead of drafting the top athletes in the country, we draft and fund the next generation of rare disease researchers,” Long tells host Lindsey Smith. So far, Uplifting Athletes has provided fifty researchers with over one million dollars in grants through this approach. Tune in to learn about other innovative work that has connected hundreds of rare disease patients with professional athletes and provided opportunities for researchers to attend patient & family conferences as our Year of the Zebra focus on rare disorders continues. Mentioned in this episode: Uplifting Athletes 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/raisethelinepodcast