Best Mike Porath Podcasts (2024)

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

2+ y 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

2+ y 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

2+ y 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

2+ y 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

2+ y 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

2+ y 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

2+ y 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

2+ y 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

2+ y 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

3y 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

3y 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

3y 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

3y 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

3y 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

3y 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

3y 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

3y 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

3+ y 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

3+ y 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

3+ y 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

3+ y 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
Jeff Goldstein and NORD's RareLaunch Research Ready 29:40

3+ y 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
Adolescent and Young Adult Rare Disease: Seth Rotberg's Story 31:07

3+ y 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
Rare Disease Research: What's All This Then? 27:32

3+ y 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
Ungeeking The Speak: Dr Rachel Bailey Talks "Gene Therapy 101" 35:15

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

3+ y 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

3+ y 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

4y 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

4y 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

4y 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

4y 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

4y 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

4y 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

4y 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

4y 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

4y 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

4y 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 …

1
Peter Saltonstall: President and Chief Executive Officer of NORD 28:56

4y ago28:56

28:56

What a great way to kick off the NORDpod series, because on today’s show host Matthew Zachary will be speaking with the man, the myth, the legend Peter Saltonstall, President and Chief Executive Officer of NORD. Peter’s been at the helm of NORD since 2008 and has a storied 30-year history of leadership for the private sector and the nonprofit commu…

1
Welcome to NORDpod (Teaser) 3:20

4+ y ago3:20

3:20

Welcome to NORDpod™, the voice of rare disease and the official podcast of The National Organization of Rare Disorders (NORD®), a 501(c)(3) patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. We are one community, and, together, our voices are louder. Learn more about NORD at http://RareD…

1
74. Recovery X - Recovery Story Amber B 46:09

6y ago46:09

46:09

?Do you or somebody you know need help??? Send us a message and we will help you find the resources you need!?Want to share your story and help others recover? We need your voice!?? APPLY HERE: https://recoveryx.org/recovery-story-g…/By Recovery X

1
74. Recovery X - Recovery Story Natalie D 41:31

6y ago41:31

41:31

Recovery Story: Natalie D ?Do you or somebody you know need help? ??Send us a message and we will help you find the resources you need! ?Want to share your story and help others recover? We need your voice! ?? APPLY HERE: https://recoveryx.org/recovery-story-guest/By Recovery X

1
73. Recovery X - Recovery Story: Diana D 33:48

6y ago33:48

33:48

Recovery Story: Diana D?Do you or somebody you know need help???Send us a message and we will help you find the resources you need!?Want to share your story and help others recover? We need your voice!?? APPLY HERE: https://recoveryx.org/recovery-story-g…/By Recovery X

1
72. Recovery X - Rickard Elmore of Treatment Strategy 32:52

6y ago32:52

32:52

Rickard Elmore of Treatment Strategy?Do you or somebody you know need help???Send us a message and we will help you find the resources you need!?Want to share your story and help others recover? We need your voice!?? APPLY HERE: https://recoveryx.org/recovery-story-g…/MENTIONED IN THIS EPSODE:Treatment Strategytreatmentstrategy.com…

1
71. Recovery X - Interview with Mike Porath founder of "The Mighty" 21:28

6y ago21:28

21:28

Interview with Mike Porath founder of "The Mighty"?Do you or somebody you know need help???Send us a message and we will help you find the resources you need!?Want to share your story and help others recover? We need your voice!?? APPLY HERE: https://recoveryx.org/recovery-story-g…/MENTIONED IN THIS EPISODE:The Mighty…

1
70. Recovery X - Interview with Ken Link of Foundations Wellness Center 30:49

6y ago30:49

30:49

Interview with Ken Link of Foundations Wellness Center.Want to share your story and help others recover? We need your voice! ?? APPLY HERE:https://recoveryx.org/recovery-story-g…/By Recovery X

1
69. Recovery X - Recovery Story - Jody B, author of "I Want You to Want to Live" and Ashley M 27:32

6y ago27:32

27:32

Recovery Story -- Jody B, author of "I Want You to Want to Live" and Ashley M ?Do you or somebody you know need help conquering addiction? Send us a message and we will help you find the resources you need to succeed!?By Recovery X

1
68. Recovery X - Recovery Story Joe Ashdale 38:02

6y ago38:02

38:02

? WANT TO HELP US SAVE LIVES? ? We offer addiction sufferers and their families with free addiction recovery resources, like educational videos and one-on-one help finding treatment. HERE'S HOW YOU CAN HELP:??Share, like, and subscribe. ??Donate to the cause:https://pages.donately.com/recov…/donate ??Join our Recovery Advocates group:https://www.fa…

1
67. Recovery X - Tom Horvath Former President of SMART Recovery 38:02

6y ago38:02

38:02

By Recovery X

1
66. Recovery X - Interview with Dr. Adi Jaffe 38:02

6y ago38:02

38:02

? WANT TO HELP US SAVE LIVES? ? We offer addiction sufferers and their families with free addiction recovery resources, like educational videos and one-on-one help finding treatment. HERE'S HOW YOU CAN HELP:?? Share, like, and subscribe. ?? Donate to the cause: https://pages.donately.com/recov…/donate ?? Join our Recovery Advocates group:https://ww…

1
65. Recovery X - Peter Grinspoon, MD. author of "Free Refills - A Doctor Confronts His Addiction" 36:42

6y ago36:42

36:42

? WANT TO HELP US SAVE LIVES? ? We offer addiction sufferers and their families with free addiction recovery resources, like educational videos and one-on-one help finding treatment. HERE'S HOW YOU CAN HELP:?? Share, like, and subscribe. ?? Donate to the cause: https://pages.donately.com/recov…/donate ?? Join our Recovery Advocates group:https://ww…

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Mike Porath Podcasts

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