Best Nemours Podcasts (2024)

1
Ep. 86: The Roadmap Project (Encore Presentation) 20:53

1h ago20:53

20:53

The Roadmap Project started in 2017 as a simple request from three parents of children with chronic conditions to the American Board of Pediatrics: Create for us a roadmap to improve the emotional health of our children. Since that time, The Roadmap Project has become a national effort that seeks to do this by: Raising awareness among patients, fam…

1
127: An Interview With Omer Abdul Hamid, MD, of Nemours Children's Hospital in Orlando, Florida 14:02

10d ago14:02

14:02

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Omer Abdul Hamid, MD, a neurologist at Nemours Children's Hospital in Orlando, Florida, on gene therapy's potential to treat Duchenne muscular dystrophy.By Rare Care Podcast

1
129: An Interview With Durresamin Khan, Pakistani Mother of a Boy With Duchenne Muscular Dystrophy 8:31

3h ago8:31

8:31

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durresamin Khan, the Pakistani mother of a boy with Duchenne muscular dystrophy, about the difficulties of obtaining treatment for DMD patients who are ineligible for gene therapy.By Rare Care Podcast

1
128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou 15:00

18h ago15:00

15:00

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.By Rare Care Podcast

1
Ep. 85: Environmental Factors and Childhood Cancer 22:14

7d ago22:14

22:14

There is a growing body of literature that has implicated the role of several environmental hazards in childhood cancer, such as exposure to pesticides, vehicle exhaust, gasoline, and tobacco smoke, all of which can increase the risk of a childhood cancer diagnosis. A new training program developed by the Western States Pediatric Environmental Heal…

1
Ep. 84: The KIDS Health Act - Whole Child Health for the Nation (Part 2 of 2) 24:53

12d ago24:53

24:53

In part 2 of The KIDS Health Act series, U.S. Senators Tom Carper and Dan Sullivan discuss ways in which the bill aims to integrate mental and physical health services for children eligible for Medicaid and Children’s Health Insurance Program (CHIP). Senator Carper (D-DE) highlights his focus on early childhood development and access to healthcare …

1
126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD) 14:23

19d ago14:23

14:23

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).By Rare Care Podcast

1
Ep. 83: The KIDS Health Act: Whole Child Health for the Nation (Pt. 1 of 2) 31:54

20d ago31:54

31:54

The Kickstarting Innovative Demonstrations Supporting (KIDS) Health Act is a bipartisan and bicameral effort now before the U.S. Congress that would establish a holistic approach to children’s healthcare by integrating mental and physical health services for children and youth who are eligible for both Medicaid and the Children’s Health Insurance P…

1
125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis 17:59

26d ago17:59

17:59

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Patricia Weltin,founder and CEO of Beyond the Diagnosis—a nonprofit that uses art to raise public awareness of children with ultra-rare diseases.By Rare Care Podcast

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Ep. 82: Pathways to Improve Social Determinants of Health 28:17

27d ago28:17

28:17

Social determinants of health (SDoH) are non-medical factors that affect health outcomes and quality of life. Much attention and work is focused on examining SDoH and creating pathways to improve them, with the ultimate goal of optimizing wellness for everyone. In this episode, we’ll take a look at two such pathways. SEGMENT 1: A paper published in…

1
125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation 16:36

30d ago16:36

16:36

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Glass, PhD, chief operating officer of the n-Lorem Foundation—and the mother of a boy with an ultra-rare disease.By Rare Care Podcast

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124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis 14:47

1M ago14:47

14:47

By Rare Care Podcast

1
Ep. 81: Celebrating Our Podiversary with the Nemours Children's Podcast Team 25:56

1M ago25:56

25:56

The Well Beyond Medicine Podcast celebrates a milestone: its first "podiversary." It’s been a year complete with influential guests, great conversations, and loyal listeners whose interest in whole child health is piqued by discussions on the podcast. Join us as we look back at some of our achievements from this year, hear from some of those guests…

1
Ep. 80: Leveraging Health Informatics to Serve the Underserved 21:47

1M ago21:47

21:47

Health informatics stands at the intersection of healthcare and information technology. It’s a science that uses healthcare data to uncover insights, advance innovation, inform research, and help clinicians make the best patient decisions and recommendations. Dr. Stacey Stokes is the Medical Director of Informatics with Children's National Hospital…

1
Ep. 79: Locked Up – Addressing the Health Needs of Incarcerated Youth with Dr. Michael DeBaun and Dr. Elizabeth Barnert 25:07

1M ago25:07

25:07

According to the Prison Policy Initiative's "The Whole Pie 2023" report, more than 47,000 children under 18 years of age are incarcerated, with 1 in 16 in an adult prison or jail. This statistic underpins the American Pediatric Society’s Issue of the Year: increasing access to quality health care for children who are incarcerated. It’s an effort sp…

1
123: An Interview With Mary Morlino, Patient Navigator at the Undiagnosed Diseases Network Foundation 11:15

1M ago11:15

11:15

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mary Morlino, who has sarcoidosis and is the patient navigator for the Undiagnosed Diseases Network Foundation.By Rare Care Podcast

1
Ep. 78: Research Update on Zika Virus and Cancer 11:16

2M ago11:16

11:16

In this mini-episode, we catch up with Dr. Tamarah Westmoreland, associate professor of surgery, and research scientist Dr. Joseph Mazar, both from Nemours Children’s Hospital, Florida. Previously featured on episode 49, Drs. Westmoreland and Mazar discussed their groundbreaking paper published in Cancer Research Communications by the American Asso…

1
Ep. 77: The Crisis of Physician Burnout with Dr. Alfred Atanda 30:10

2M ago30:10

30:10

The American Medical Association (AMA) defines physician burnout as a long‑term stress reaction that can include emotional exhaustion, depersonalization and a feeling of decreased personal achievement. It's a condition that affects all specialties and practice settings – and the AMA has declared physician burnout a crisis. A 2023 AMA survey of phys…

1
122: An Interview WIth Tracy Sharp, a Patient With Lambert-Eaton Myasthenic Syndrome 13:46

2M ago13:46

13:46

By Rare Care Podcast

1
Ep. 76: What's Keeping Kids Up at Night? The Impact of Excessive Screen Time on Adolescents with Dr. Paul Weigle 19:21

2M ago19:21

19:21

Dr. Weigle joined us live from the Pediatric Academic Societies (PAS) Annual Meeting to discuss the impact of excessive screen time on adolescents and how parents can support healthy limits. Recorded live at PAS 2024 in Toronto, Canada, on May 4, 2024. Watch on YouTube. Guests: Paul Weigle, MD, Associate Medical Director, Natchaug Hospital of Hartf…

1
Ep. 75: Pressures of Childhood - Understanding and Managing Pediatric Hypertension with Dr. Carissa Baker-Smith 14:03

2M ago14:03

14:03

The overall prevalence of hypertension in childhood is 2% to 5%, and it can be worse (or, worse yet, go undetected) in high-deprivation neighborhoods in the United States. Learn more about the research done in this area by Dr. Carissa Baker-Smith, Director of Pediatric Preventive Cardiology at Nemours Children’s Health. She also shares her insights…

1
Episode 74: Leading with Heart with Dr. Matthew Davis 20:04

2M ago20:04

20:04

As Executive Vice President, Enterprise Physician-in-Chief, and Chief Scientific Officer for Nemours Children’s Health, Dr. Matthew Davis oversees all clinical and research activities across Nemours and works to ensure that education, training, and community engagement are fully integrated into clinical and research efforts. It's a position of grea…

1
Ep. 73: The Compass, the Mirror and the Swiss Army Knife – A Conversation On Pediatric Leadership with Dr. Kanekal Gautham 19:17

2M ago19:17

19:17

What do a compass, a mirror, and a Swiss Army knife have to do with pediatric leadership? Dr. Kanekal Gautham, Pediatrician-in-Chief at Nemours Children's Hospital, Florida, makes the connections and provides key principles of leadership in pediatrics. Recorded live at the Pediatric Academic Societies Meeting (PAS) in Toronto, Canada on May 3, 2024…

1
121: An Interview With University of Pennsylvania Neurologist and CIDP Expert Chafic Karam, MD 4:13

2M ago4:13

4:13

By Rare Care Podcast

1
Ep. 72: Furthering Healthcare's Digital Revolution 36:30

2M ago36:30

36:30

The promise of digital integration in healthcare has come a long way but remains a work in progress. Currently, digital tools give providers and patients secure access to health information, help improve communication, provide personalized care and education, and allow for remote monitoring by providers and self-management by patients. To have all …

1
120: An Interview with Avner Reshef, MD, Top Israeli Expert in Hereditary Angioedema 17:11

2M ago17:11

17:11

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Israeli expert Avner Reshef, MD, director of the Allergy, Immunology, and Angioedema Center at Barzilai University Medical Center in Ashkelon, only a few miles from the border with war-torn Gaza.By Rare Care Podcast

1
119: An Interview With Pediatric Neurologist Edward Smith, MD, on the FDA Approval of Vamorolone for Boys With Duchenne Muscular Dystrophy 15:58

2M ago15:58

15:58

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Edward Smith, MD, about the recent approval of vamorolone, a synthetic corticosteroid, in boys with Duchenne muscular dystrophy.By Rare Care Podcast

1
Ep. 71: Hidden Helpers Heard 30:28

2M ago30:28

30:28

According to a study commissioned by The Elizabeth Dole Foundation, there are 2.5 million children, teens, and young adults in the U.S. taking on significant responsibilities for wounded, ill, or aging veterans within their own families. These "hidden helpers" are supporting their wounded parent, grandparent, sibling or other family member with act…

1
118: An Interview With Sharon Hesterlee, PhD, Chief Research Officer at the Muscular Dystrophy Association 7:58

3M ago7:58

7:58

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sharon Hesterlee, PhD, chief research officer at the Muscular Dystrophy Association, about the recent proliferation of gene therapies and other treatments for neuromuscular diseases.By Rare Care Podcast

1
Ep. 70: Hidden Helpers – Hidden No More with Dr. Larry Moss and Steve Schwab 27:51

3M ago27:51

27:51

When it comes to supporting our nation's military caregivers – the family members and friends caring for a wounded, ill, or injured veteran each day in their homes – the Elizabeth Dole Foundation is a true leader. The foundation aims to raise awareness, conduct research, and support military family caregivers. Among that group, you will find childr…

1
Ep. 69: A Conversation with Matthew Cook from the Children's Hospital Association 33:35

3M ago33:35

33:35

When it comes to healthcare, children are not miniature adults. As growing, maturing human beings, they require regular well-child attention, care, and treatment that considers their size and their ongoing and seemingly ever-changing developmental needs as they make the trek into adulthood. Children's hospitals, in particular, play a unique role in…

1
117: An Interview With Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, About Living With Spinal Muscular Atrophy 12:02

3M ago12:02

12:02

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, at the MDA's 2024 Clinical & Scientific Conference in Orlando, Florida. Walker, 39, has spinal muscular atrophy (SMA) type 2.By Rare Care Podcast

1
Ep. 68: The Nemours Estate 18:02

3M ago18:02

18:02

All across Nemours Children's Health, from Wilmington to Pensacola to Orlando to Jacksonville, and points in between - the ethos of Well Beyond Medicine is becoming well established. That includes the Nemours Estate in Wilmington, the only public park in the nation with a hospital on its grounds. Guests Gina Altieri, Jean Hershner, Ken Darsney, and…

1
116: An Interview With Seema Lalani, MD, Director of Project GIVE, a Pediatric Rare Disease Screening Program in the Rio Grande Valley of Texas 11:34

3M ago11:34

11:34

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Seema Lalani, MD, of Baylor College of Medicine in Houston, Texas. Dr. Lalani directs Project GIVE (Genetic Inclusion by Virtual Evaluation), a pediatric screening program in the impoverished 4-county Rio Grande Valley region of southern Texas.…

1
Ep. 67: Unlocking the Power of Gratitude with Lee Brower, Michael Rouse and Dr. Alfred Atanda 34:40

3M ago34:40

34:40

"Even in the worst conditions you can be grateful in something and not have to be grateful for it," according to Lee Brower, entrepreneur coach and founder of Empowered Wealth. He joins this week's episode as we explore the power of gratitude. We're also joined by Nemours Children's Health's Dr. Alfred Atanda who shares the clinical perspective of …

1
Ep. 66: The PLAYERS Championship – Golf for Good 23:37

3M ago23:37

23:37

This year – 2024 – marked the 50th anniversary of THE PLAYERS Championship, a premier tour stop for PGA golfers from around the world! Held at the TPC Sawgrass in Ponte Vedra Beach, Florida (just south of Jacksonville where Nemours Children's Health is headquartered), THE PLAYERS Championships attracts the best that professional golf has to offer f…

1
115: An Interview With Matt Trudeau of ITF Therapeutics, on Givinostat as a Therapy for Duchenne Muscular Dystrophy 9:52

3M ago9:52

9:52

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Matt Trudeau, head of ITF Therapeutics—a division of Italy's Italfarmaco—on treating Duchenne muscular dystrophy with givinostat, a histone deacetylase inhibitor.By Rare Care Podcast

1
Ep. 65: Exploring Health Equity with Dr. Tony Iton 35:34

3M ago35:34

35:34

Achieving health equity is a complex and ongoing endeavor that involves addressing various social, economic, and systemic factors that contribute to disparities in health outcomes among different populations. If it sounds like challenging work, it is. But that hasn't stopped The California Endowment's Dr. Tony Iton from making it his life's work. W…

1
114: An Interview With Thomas Holm Pedersen, PhD, Cofounder and CEO of Denmark's NMD Pharma 14:34

4M ago14:34

14:34

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Thomas Holm Pedersen, PhD, cofounder and chief executive of NMD Pharma, a Danish company that's pursuing the use of chloride channel 1 (ClC-1) as a novel target for restoring muscle function in both myasthenia gravis and spinal muscular atrophy.…

1
Ep. 63: Ginsburg Institute: Equalizing Health 24:03

4M ago24:03

24:03

In 2022 a $25 million donation from the Ginsburg Family Foundation established the Ginsburg Institute for Health Equity at Nemours Children’s Health. The Institute represents a first-of-its-kind initiative to advance health equity for children in medically underserved areas by partnering with communities and codifying evidenced-based approaches tha…

1
Ep. 64: Ginsburg Scholars - The Future of Health Equity 15:32

4M ago15:32

15:32

In 2022, a $25 million donation from the Ginsburg Family Foundation established the Ginsburg Institute for Health Equity at Nemours Children’s Health. One major initiative of the Institute is the Ginsburg Health Equity Scholars Program. The scholars program seeks to prepare rising members of the healthcare, public health, and scientific workforce t…

1
113: An Interview With Courtney Silverthorn, MD, Associate VP of Science Partnerships at the Foundation for the National Institutes of Health 12:19

4M ago12:19

12:19

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Courtney Silverthorn, MD, of the Foundation for the National Institutes of Health (NIH) about the NIH's Bespoke Gene Therapy Consortium.By Rare Care Podcast

1
Ep. 62: Strategies for Accelerating an Autism Diagnosis 34:37

4M ago34:37

34:37

From the time a pediatrician or parent suspects a child could be affected by autism spectrum disorder (ASD) until an actual diagnosis takes over two years! On today’s episode, we learn about two strategies that are currently in use to reduce that time to just weeks — or even days. Thanks for tuning in today! Please visit NemoursWellBeyond.org to ca…

1
Ep. 61: Five DEI Questions, Five Black Healthcare Leaders (Pt. 2 of 2) 24:12

4M ago24:12

24:12

In part two of our series, we dig deeper into conversations with our Black physician leaders, guided by our Black, African and Caribbean Associate Resource Group. Joining the table in today’s episode is Latonya Quann, Clinical Operations Supervisor for Nemours Children’s Health, Orlando, and Jane deHeers, Director of Operations, Therapeutic and Reh…

1
112: An Interview With Cristol Barrett O'Loughlin, CEO of Raregivers 12:52

4M ago12:52

12:52

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Cristol Barrett O'Loughlin, founder and CEO of Raregivers—a nonprofit organization that offers mental health and wellness services to those caring for people with rare diseases.By Rare Care Podcast

1
Ep. 60: Five DEI Questions, Five Black Healthcare Leaders (Pt. 1 of 2) 27:23

4M ago27:23

27:23

February is Black History Month and, to celebrate, the Well Beyond Medicine podcast welcomed colleagues from the Nemours Children's Health Black, African and Caribbean Heritage Associate Resource Group (ARG). They posed questions about diversity, equity, and inclusion to Black physician leaders across the Nemours Children's enterprise, including: K…

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111: An Interview With Omar Kamlin, MD, Senior Medical Director at Orphalan 15:08

4M ago15:08

15:08

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Omar Kamlin, MD, senior medical director at French drugmaker Orphalan, whose therapy, Cuvrior, treats Wilson disease.By Rare Care Podcast

1
Ep. 59: Understanding Heart Disease Associated with Duchenne Muscular Dystrophy 9:19

4M ago9:19

9:19

Duchenne muscular dystrophy is the most common and severe form of muscular dystrophy. According to Nemours KidsHealth.org, it affects boys more often than girls. According to the Muscular Dystrophy Association, heart and respiratory muscle problems emerge in the teen years and can lead to serious complications. In terms of the heart, the issue at h…

1
Ep. 58: New Hope in Fighting Duchenne Muscular Dystrophy 30:23

4M ago30:23

30:23

Muscular dystrophy is a genetic disorder that makes the muscles of the bodies of those affected get weaker over time. There's no known cure, but there are treatments, and researchers continue to learn more about how to prevent and treat it. In this episode, we discuss one specific type of genetic disorder: Duchenne muscular dystrophy, and learn abo…

1
Ep. 57: Partnering on Tomorrow's Healthcare Workforce 25:40

5M ago25:40

25:40

When it comes to providing health services, the most precious resource of any healthcare system, hospital or provider's office is its people: those who make up the healthcare workforce. Yet the nation's expanding healthcare needs are outstripping the workforce size, creating a severe shortage of employees at all levels. While there is no single sol…

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