Best Mr No Bs Health Podcasts (2024)

1
Season Finale: The FDA's Dr. Kathleen Donohue and RDCA- DAP 26:39

2y ago26:39

26:39

Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an FDA-approved treatment. Dr. Donohue oversees the nation…

1
Living With Trichotillomania: Pageant Queen Sarah Pennington 34:00

2y ago34:00

34:00

You're in for a treat on today's episode of NORDpod as I welcome chronic illness advocate Sarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children in the US alone may face Trichotilloma…

1
Paying It Forward: Young Adult Brain Cancer Survivor Rob Long 31:33

2y ago31:33

31:33

Rob Long is the Executive Director at Uplifting Athletes, a nonprofit organization that inspires the rare disease community with hope through the power of sport. In 1020, as a Pre-Season All-American playing for the Syracuse Orange Football team, he was contemplating which NFL team he wanted to be on. Until he was diagnosed out of the blue with a G…

1
The Incredibly Talented Mr Bobby Foster 38:01

2y ago38:01

38:01

Bobby Foster is a content creator, a rapper/producer, a spoken word poet, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. NORDpod is the official podcast of The …

1
The Patient Experience: Philip Bright 26:57

2y ago26:57

26:57

Today on NORDpod, Matthew Zachary welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) at a very young age and has lived an accelerated life facing this rare condition. HHT is a congenital dominant hereditary disorder in which some blood vessels do not develop properly. Phil subs…

1
One Piece Of The Puzzle: Dr. Adrienne Hammill 30:23

2y ago30:23

30:23

Dr. Adrienne Hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincinnati Children's Hospital. Her path to becoming a physician started when she was eight years old when she read an article about retinoblastoma, which is cancer with a genetic cause. She decided then that s…

1
From Pain To Purpose: Kari Luther Rosbeck 33:24

2y ago33:24

33:24

Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her…

1
Chris Anselmo: The Accidental Muscular Dystrophy Advocate 28:04

2y ago28:04

28:04

Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he'd get. After a car crash found him in the hospital on the receiving end of a random diagnosis of having extremely high creatine kinase levels, he was soon after diagnosed with Dysf…

1
Rare Disease Day 2022 with actor Adam Rose 34:10

2y ago34:10

34:10

Welcome to Season Four of NORDpod, the voice of rare disease. Kicking off 2022, and in recognition of Rare Disease Day, we are proud to welcome actor and social media influencer Adam Rose. Adam has amassed a considerable fan base by creating relatable, entertaining, and insightful video segments on TikTok, often sporting a blue cardigan. He is also…

1
Dr. Edward Neilan: NORD's Chief Medical and Scientific Officer 29:36

2+ y ago29:36

29:36

On the show today, we welcome Dr. Edward Neilan, NORD's own Chief Medical and Scientific Officer. In this role, Ed oversees medical and research initiatives, including the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) program that NORD established in partnership with FDA and the Critical Path Institute (C-Path) He carries a …

1
[BONUS] The 2021 NORD Breakthrough Summit 43:39

2+ y ago43:39

43:39

Today’s extra-long, extra-special BONUS episode is brought to you from the 2021 NORD Breakthrough Summit. Every year, NORD hosts its flagship conference in October to discuss what’s new, relevant, and on the horizon in the rare disease space. The session we’re featuring is “Designing Trials for Inclusivity, Equity, and Engagement,” The discussion a…

1
One Father's Barefoot 1,200 Mile Journey 33:40

2+ y ago33:40

33:40

Chris Brannigan, a major in the British Army, took off his boots for a 1,200-mile barefoot walk down the eastern seaboard of the United States in an effort to raise funds for the creation of a gene therapy treatment that could help patients like his daughter Hasti, battling Cornelia de Lange Syndrome (CdLS ). The NORD community is so proud of Chris…

1
Meet Kam Redlawsk: Disability Advocate 30:47

2+ y ago30:47

30:47

On the show today, Kam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE Myopathy, which is a very, very rare degenerative muscle wasting disorder. There's so much to unpack about her that can only…

1
The Next Generation of Rare Disease Advocate 31:59

2+ y ago31:59

31:59

Joining me today is Lewis Freese, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I mean, not that there's ever a good time for this to happen but COME ON!) The condition is called IGA Vasculitis and typically affects 2 in 100,000 children each year. As a college student, this threw …

1
The Strength of Families 33:52

2+ y ago33:52

33:52

On the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and her husband, Brian, tried to have a baby on their own for 4½ years until they were diagnosed with unexplained infertility. Endless cycles and tens of thousands of dollars later, they are now the proud parents …

1
Rare Cancer Day: An Interview With Dan “Dry Dock” Shockley 31:08

2+ y ago31:08

31:08

In celebration and recognition of Rare Cancer Day, I had the pleasure of speaking with Dan “Dry Dock” Shockley. Dan is a retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and hereditary colon cancer warrior. After his initial colonoscopy, he was recommended for a genetic panel, passed along to specialists, was diagnosed and t…

1
Sturm and Drang: One Disabled Journalist’s Story 35:03

2+ y ago35:03

35:03

Kicking off Season 3 of NORDpod, I am joined by Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronically ill people around the world and spread the word about Ehlers-Danios Syndrome and other chronic illnesses. From giving up her job as a research associate in 2010 to cashing out her life savings to …

1
Policy Matters: One Dad's Journey 29:06

3y ago29:06

29:06

On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Rare Action Network. Nick and his wife were welcomed into the club no one asks to join when their daughter Hayden was diagnosed with an extremely rare condition known as Cystinosis. In navigating these …

1
NORD's Rare Disease Advisory Councils 25:55

3y ago25:55

25:55

On the show today, it's all about Rare Disease Advisory Councils – or RDACs, for short. RDACs provide a platform for the rare community to have a stronger voice in state government. Joining us is NORD Director of Policy Heidi Ross, your one-stop human shop to understanding what these councils are, and how you – the listener – can take an active rol…

1
Fifteen Months Later... 38:11

3y ago38:11

38:11

Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. The pandemic’s impact cannot be understated. Millions of lives have been uprooted as we mourn the deaths of hundreds of…

1
Rare Voices of NORD: Jo-Ann D'Angelo 25:57

3y ago25:57

25:57

On the show today, Matthew Zachary welcomes Jo-Ann D'Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extremely rare facial disfigurement that impacts the bone, muscle, and dental only on one side of the face. There is no cure, and the only treatment is inv…

1
Show 13: When things fall apart 20:05

3y ago20:05

20:05

What do we do when things fall apart? What do we do when things are truly dark and we don't know what to do. Separation, divorce, breakup, depression... in this show I talk about what you can do as man to move on and find the motivation and energy you need.By Gabriel Machuret

1
Show 12: How Minimalism changed my life as a man 19:32

3y ago19:32

19:32

I'm not a hardcore minimalist, or the best friend of Marie Kondo , but since starting my minimalism process , path, my life as a man has change. In this show, show #12 I talk about how minimalism has become a tool and an option of freedom and empowerment.By Gabriel Machuret

1
Jeff Goldstein and NORD's RareLaunch Research Ready 29:40

3y ago29:40

29:40

On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s in peak health with Idiopathic Pulmonary Fibrosis — lots o…

1
Show 11: Having Better Sex - as a man 20:48

3y ago20:48

20:48

As men we brag about sex, we complain of not having enough sex, and we barely study sex as a topic, learn about sex or try to improve our sexual performance, stamina, or even our own understanding of what makes a man better in bed. We talk a lot but we don't improve at the same speed we talk.By Gabriel Machuret

1
Adolescent and Young Adult Rare Disease: Seth Rotberg's Story 31:07

3y ago31:07

31:07

On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer was not better or worse, just different. And the same holds true for this community. Joining me is Seth Rotberg, a very vocal leader in the AYA rare disease community and the Founder of Ou…

1
Show 10: No More Mr Nice Guy, The Nice Guy Syndrome 19:51

3y ago19:51

19:51

Show 10: Are you a nice guy? The nice guy syndrome affects millions of men during the life, making them miserable, mediocre, bad partners and overall the opposite of what they are trying to become.By Gabriel Machuret

1
Show 9: Fear and the BS stories we tell ourselves 21:15

3y ago21:15

21:15

We all suffer Fear but the question is how fear serve us and the stories we tell ourselves to keep living in fear. Fear is the cancer of modern men and in this show I talk about how to shift our approach to fear.By Gabriel Machuret

1
Show 8: The 75 Hard Challenge - Introduction 18:02

3y ago18:02

18:02

Show #8 in this show I talk about my process starting the 75 Hard Challenge....By Gabriel Machuret

1
Show 7: Making Money Online - A quick guide 20:39

3y ago20:39

20:39

how do we achieve more financially? Specially if we want to quit the 9 to 5... I have been making money online or working as an online entrepreneur for year and this show is for all of those men that want to start working online... a quick overview of different ways to make it onlineBy Gabriel Machuret

1
Rare Disease Research: What's All This Then? 27:32

3y ago27:32

27:32

On the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, I’m glad you asked. We’ll be discussing NORD’s I AM RARE platform, a patient registry that, with the rare disease community’s help, allows for a better understanding of rare diseases,…

1
Show 6: Leaving the 9 to 5 - Should you do it? 19:37

3y ago19:37

19:37

Should you leave your 9 to 5 to go solo? To start a business? To become an entrepreneur. This is NOT an easy option, so in this show I talk about things to consider if you are looking to go quit the 9 to 5 and start your own biz, freelancing career.By Gabriel Machuret

1
Show 5: Becoming a Better Dad - The challenges of Fatherhood 21:55

3y ago21:55

21:55

Becoming a dad is not easy ... and then being a dad is even more challenging. In this show I explore the challenges us, men, we face to a better dad and how we can achieve that sometimes impossible balance of being a great dad, while connecting with our children.By Gabriel Machuret

1
Show 4: Productivity and destroying the Procrastination Monster inside you 18:55

3y ago18:55

18:55

How to become more productive while we work towards achieving more, stay more focused and avoiding the procrastination temptations we all sufferBy Gabriel Machuret

1
Show 3: Dealing with Divorce (part 2) - How to survive as a strong man 20:53

3y ago20:53

20:53

In Show 3, we continue with the challenge of Divorce, how to survive divorce, how not to lose your mind and how to literally become stronger while we face an extremely challenging time of our life.By Gabriel Machuret

1
Ungeeking The Speak: Dr Rachel Bailey Talks "Gene Therapy 101" 35:15

3y ago35:15

35:15

Dr. Rachel Bailey joins me today on the program. She is an Assistant Professor of the Center for Alzheimer's and Neurodegenerative Diseases and Pediatrics at UT Southwestern Medical Center. Today's episode is all about those two magic words, no not "COVID Vaccine — those indeed are magic words — no, I'm referring to "Gene Therapy." Yes, Rachel and …

1
Show 2: Dealing with Divorce (part 1) - How to survive as a strong man 20:43

3y ago20:43

20:43

Divorce is not easy! But it's usually one of those events that break men like you and I... this is my 2 series show about divorce and why it's so vital for men to follow specific steps to remain strong and composed during the most difficult time of their lifes.By Gabriel Machuret

1
Show 1: What is your Purpose as a Man (not an easy question) 19:40

3y ago19:40

19:40

What is your purpose? In this show, show #1, we start the show with the goal of tackling the most difficult question a man can define for himself. What is our purpose, and what are we trying to achieve in our life.By Gabriel Machuret

1
A Conversation With Yann Le Cam: EURODIS Co-Founder and Chief Executive 33:26

3y ago33:26

33:26

On the show today — we’ve got a big one or you — Yann Le Cam, Co-Founder and Chief Executive Officer of EURODIS and Rare Diseases International — and “enraged rare disease advocate”, as the media have hailed him. We only recently celebrated Rare Disease Day 2021 on February 28th so we thank all of you who participated and remind those who could not…

1
Season Two PREMIERE with CEO Peter Saltonstall 30:11

3y ago30:11

30:11

It is Season Two of NORDPod, and we're kicking it off in style with a "Last Year Tonight"-themed episode with NORD's President and CEO, Peter Saltonstall, from his undisclosed bunker in New England. 2020 was not the best of times, but it was not the worst of times either, as you'll hear from our conversation for NORD. In today's episode, we'll be d…

1
[BONUS] Opening Plenary: 2020 LRLS Patient and Family Forum 1:23:16

3+ y ago1:23:16

1:23:16

At NORDpod, we share our individual stories and experiences through bi-weekly conversations to celebrate (and sometimes commiserate) all the ways rare disease impacts our lives. This week’s episode is a supersized BONUS POD from the 2020 Living Rare Forum plenary session "Rare Storytelling Hour." The session was moderated by Lesli Nordstrom, NORD D…

1
Welcome to the NORD Rare Cancer Coalition 32:28

3+ y ago32:28

32:28

On the show today, we’re talking all things rare cancer and highlighting the incredible impact that NORD’s Rare Cancer Coalition has made since it was founded — by our two guests: John Hopper President of the Board of the Fibrolamellar Cancer Foundation and Founding Chairman of the GI Cancer Alliance AND Jim Palma, Executive Director at the Target …

1
Prescription Drug Compliance, Adherence, and Robots, OH MY! 31:47

3+ y ago31:47

31:47

On the show today, Tom Rhoads, advocate, caregiver, and Founder and CEO at Spencer Health Solutions, whose mission is — if we may so paraphrase — make life easier for families and caregivers by simplifying the complex world of prescription medication adherence. Tom talks about how to make the patient experience better by taking into account that an…

1
Sarah Hill: A Young Life, Interrupted 25:24

3+ y ago25:24

25:24

Today’s show is all about one patient’s story navigating the world of rare disease, you know – the club you didn’t ask to join, but somehow, once you’re here, you’re kind of family? Sarah Hill had a life interrupted at a very young age. After being fabulously misdiagnosed and not taken seriously for years, at the age of 16, all of the dots finally …

1
More Telehealth with Pamela Gavin, Chief Strategy Officer at NORD 24:19

3+ y ago24:19

24:19

On the show today: Pamela Gavin, Chief Strategy Officer at NORD. This episode is Part Three in — you guessed it — our three-part series on Telehealth… only this time around, it’s all about policy, advocacy, and how the only thing that has ever moved the needle to make life better for patients are patients like you. COVID has forever changed how we …

1
Crisis Management: How To Endure With Style 30:12

3+ y ago30:12

30:12

On the show today: Crisis Management OR how to pivot with as much style and grace as possible when all plans go out the window. Joining us is Debbie Drell, Director of Membership here at NORD and Mary McGowen, Executive Director of the Myositis Association, whose mission is to improve the lives of persons affected by myositis, fund innovative resea…

1
[BONUS] #NORDingOut | Meet the Founders of NORDpod 31:56

3+ y ago31:56

31:56

On this extra special BONUS EPISODE of NORDpod, it’s our very own Lesli Nordstrom, Director of Marketing and Communications! AND... In an epic role reversal, she dropped by OffScrip Media Studios in downtown Manhattan for a LIVE in-person interview with Matthew Zachary and OffScrip Media co-founder and COO Andrew McDowell. Yes, we took all the prec…

1
Telehealth: From Bogeyman to Clinical Practice 23:03

3+ y ago23:03

23:03

On today's show, our time's enduring topic — No, not COVID, but it does make a distinct and necessary cameo on the show — No, we’re talking about Telehealth. Telemedicine. Tele–all the things. Perhaps even the telephone when required. Joining us are Dr. Natasha Shur, Medical Geneticist, and Monisha Kisling, a genetic counselor both from Children's …

1
Telehealth: A Lifesaver For One Rare Disease Family 29:57

3+ y ago29:57

29:57

On today's show, host Matthew Zachary welcome parents Alice Alpert and Edgar Wonzica to share their story of entering the rare disease community by way of their beautiful son Leo being born with Treacher Collins syndrome, a very rare genetic disorder with fewer than 20,000 US cases per year. Edgar, a practicing psychiatrist with a background in cli…

1
Mike Porath: Founder and CEO of The Mighty 24:58

3+ y ago24:58

24:58

On today's show, the man, the myth, the legend, Mike Porath, Founder and CEO at The Mighty and member of the Board of Directors at NORD. For those unaware, The Mighty is the world's largest digital health community online at TheMighty.com and via a free mobile app for iOS and Android. 3MM members can't be wrong, and I can attest that this. We talk …

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