Best BloodStream Media Podcasts (2024)

1
Take The First Step 19:56

1d ago19:56

19:56

Your bleeding disorder doesn’t define you. But it is a part of who you are. And the only way to learn your potential, is to take that first step. Chris talks with Paul Sebastian and Sam Kishyo about their first steps, and learning that the journey can only take you as far as you’re willing to go. The Final Summit was also made possible by support f…

1
Journey Beyond Diagnosis: Gary Linehan's Hike and Hope 22:44

1d ago22:44

22:44

On this episode, Gary Linehan, an experienced educator and avid hiker, shares his profound journey from being diagnosed with polycythemia vera (PV) in 2021 to embarking on ambitious hiking adventures, including the Tour Mont Blanc. Linehan discusses his initial symptoms, the challenges of misdiagnosis, and the crucial support system that includes h…

1
Hemophilia Film: What We Wished We Could Be 1:05:58

2h ago1:05:58

1:05:58

Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the chal…

1
007 - Is My 'Artist Facade' Real? (feat. Hady Afif) 26:51

4h ago26:51

26:51

In this new episode with Dubai-based photographer Hady Afif, we discuss the art industry, social media, and the significance of culture within an artist's work. Is it our duty to portray our heritage? Why is everyone suddenly so aloof and famous? What makes you a "real artist"? Do we have to portray a facade in real life for people to take us serio…

1
Why Me? Why Not Me?! 28:04

10d ago28:04

28:04

Inside the mind of everyone with a bleeding disorder exist two unique mindsets: “Why is this happening to me?” And “If I can take on this, I can take on the world.” Today, Chris talks with chef Mike Hargett and pediatrician Dr. Vyankatesh Pralikar about their unique journeys of facing their own doubts, and coming out stronger on the other side. The…

1
Live in Atlanta: Thriving with Thalassemia 46:11

2d ago46:11

46:11

On this episode of Thal Pals we’re live in Atlanta, Georgia for the 2024 Cooley’s Anemia Foundation’s 2024 Patient-Family Conference. We assembled a panel moderated by Dr. Kevin Kuo and guest host Shae Ghosh. The panel dove into inspiring stories and practical advice from individuals living with thalassemia. Brian Goff, CEO of Agios Pharmaceuticals…

1
Tell Your Story 27:30

2d ago27:30

27:30

Stories are more than tall tales. They help us relate. They inspire. They educate. They make us feel less alone. Chris talks with Chetan Motiwaras and Patrick James Lynch about the power of story when it comes to bleeding disorders, and how their drive to tell stories led them on their own life’s journey. The Final Summit was also made possible by …

1
Gene Therapy Reimbursement? We got you covered. 45:23

7d ago45:23

45:23

Patrick survives his first tornado warning and we’ve got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show …

1
The Start of the Journey 26:27

25d ago26:27

26:27

Every story has a beginning. And every journey starts with that first step. Chris talks with Trevor Martin & Destiny Danaye, two budding artists with bleeding disorders who, despite their young age, have lived an entire life before their journey even began. The Final Summit was also made possible by support from Genentech. Visit GenentechHemophilia…

1
Season 3 Teaser Trailer 1:59

14d ago1:59

1:59

For many of us, the mountains we climb aren’t physical. They’re spiritual, mental, psychological, and ultimately inspirational. In this season, we’re hearing from people with bleeding disorders from all over the world, who faced their own final summit, and fought for their dreams despite all obstacles. Tune into Season Three of The Final Summit. Co…

1
The Dark Side of High Achievement 38:27

18d ago38:27

38:27

Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I’m Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plu…

1
PKD International Guidelines 37:30

25d ago37:30

37:30

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachel Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the impor…

1
Iron Will – Management of Iron Overload 24:58

22d ago24:58

24:58

On this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalementi and Dr. Kevin Kuo dive into the topic of iron overload, a critical issue for patients with thalassemia. They discuss the body's mechanisms in handling iron, the dangers of iron overload due to blood transfusions, and the importance of chelation therapy. Dr. Kuo emp…

1
Janie Davis, Director of Patient Advocacy at Agios 14:29

29d ago14:29

14:29

Holly John, Agios’ Senior Director of Patient Advocacy, has a partner working with her on sickle cell disease patient advocacy! On this episode of Cheat Codes: A Sickle Cell Podcast, Dr. Z and Dr. C Janie Davis. Janie is the Director of Patient Advocacy at Agios Pharmaceuticals and is excited to work with the sickle cell community. SHOW DESCRIPTION…

1
Clinical Trials, Caregiving, and NEW MUSIC!? 43:37

1M ago43:37

43:37

On this episode, Patrick James Lynch honors the late Neil Frick, Senior VP for Medical Programs at the National Bleeding Disorders Foundation, recognizing his invaluable two-decade contribution to the bleeding disorders community. We also discuss hemophilia B gene therapy with Dr. Mark Redding, focusing on unique clinical trial designs and the role…

1
What to Know about Progression in Polycythemia Vera 23:43

1M ago23:43

23:43

On this episode, Dr. Douglas Tremblay from Mount Sinai School of Medicine in New York City discusses progression in polycythemia vera (PV). He elaborates on the transformation of PV into other diseases such as myelofibrosis and acute myeloid leukemia (AML), different ways progression can be defined, and the factors that contribute to the risk of pr…

1
The multi-faceted role of HTC social workers 1:02:23

2M ago1:02:23

1:02:23

Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I’m Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment? Show Notes: Subscribe: The BloodStream Po…

1
The Importance of Community-Based Organizations for the SCD Community 45:48

2M ago45:48

45:48

Join Dr. Z and Dr. C as they host a live panel from Florida with key figures from various community-based organizations (CBOs) dedicated to supporting those affected by sickle cell disease. Panelists share insights on the vital roles CBOs play, their unique challenges, successes, and the importance of collaborations with healthcare providers, pharm…

1
Cooley’s Care Walks 32:43

2M ago32:43

32:43

On this episode of Thal Pals, your host NinaMaria Badalementi, along with special guests Yasmeen and Paris, takes listeners through a detailed discussion about Cooley's Care Walks. We start with Yasmeen and Paris sharing personal experiences with thalassemia, the significance of community, and encouraging participation in Cooley's Care Walks. The e…

1
Raising Two Children with PK Deficiency 26:53

2M ago26:53

26:53

On this episode, Dr. Rachael Grace talks with the King family. Jennifer and Jerry King have been raising William and Lily. Both have pyruvate kinase deficiency and we discuss how they’ve managed the disease with their two children.. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended f…

1
Life with an Invisible Disorder 28:15

2M ago28:15

28:15

Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We’ve got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial do…

1
The Warrior Poet: A Rising Star: Dr. Alex Glaros 27:44

3M ago27:44

27:44

On this episode of Cheat Codes: A Sickle Cell Podcast, we’re coming to you again from Detroit, Michigan. Here, the docs sit down with Dr. Alex Glaros. Dr. Glaros is a Pediatric Hematologist-Oncologist at Children’s Hospital of Michigan. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people…

1
Mild Hemophilia Matters 56:20

3M ago56:20

56:20

Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine and…

1
Raising & Being a Teen with PK Deficiency 32:47

3M ago32:47

32:47

On this episode, Dr. Rachael Grace talks with Jessica Kellar and her teenage son Travis. They discuss Travis’ diagnosis, actively involving him in his own care and how to navigate life as a teenager with pyruvate kinase deficiency. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended fo…

1
UK Blood Inquiry Clive Smith & Laurence Woollard 52:26

3M ago52:26

52:26

Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton’s story (the first hemophilia B patient to be commercially dosed with gene therapy!). Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, vi…

1
Navigating the Currents: Interferons in the Treatment of Polycythemia Vera 25:45

3M ago25:45

25:45

On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia. If you’d like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia). Connect w…

1
On the Shoulders of Giants is a hit (!) and I’m Fine is back 38:37

4M ago38:37

38:37

Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I’m Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. On the Sho…

1
Revving Up for Clinical Trial Awareness in the Motor City 46:54

4M ago46:54

46:54

On this episode of Cheat Codes: A Sickle Cell Podcast, we’re live in the Motor City: Detroit, Michigan. This live event featured Dr. Z and Dr. C interviewing a panel of esteemed guests including Davinna Christian, Dr. Alex Glaros and Clifton Kirkman, II discussing clinical trial awareness. We also hear from Dr. Wanda Whitten-Shurney at the end of t…

1
New NBDF CEO, Phil Gattone 38:55

4M ago38:55

38:55

We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC. Show Notes: Subscribe: The B…

1
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman 45:09

5M ago45:09

45:09

Dr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athletes segments will feature bleeding disorder community m…

1
Highlights from ASH with Dr. Akshat Jain 44:04

5M ago44:04

44:04

We’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don’t miss it! Show Notes: Subscribe: The …

1
Introducing a New Thal Pal 30:17

6M ago30:17

30:17

On this episode, we reintroduce you to NinaMaria Badalamenti as our new co-host of Thal Pals. NinaMaria is a patient advocate who has previously appeared on the show. Alongside Dr. Kevin Kuo, the two discuss what’s new in thalassemia. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and …

1
What We’ve Learned So Far About Polycythemia Vera 35:56

6M ago35:56

35:56

On this episode, we travel back to our previous episodes to deliver some highlights of what we’ve learned so far. Dr. Prithviraj Bose gives us an overview of polycythemia vera, patient Nick Napolitano discusses his diagnosis, husband and wife team Joe and Patty Monteleone discuss the caregiver/patient relationship, David Wallace talks about his ins…

1
HFA CEO Dan Kelsey and Rare Disease Day tribute 1:08:50

6M ago1:08:50

1:08:50

HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit b…

1
NBDF welcomes new CEO; HFA responds 28:50

6M ago28:50

28:50

NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day. Show Notes: Subscribe: The BloodStream Podcast Present…

1
Polycythemia Vera: Treatment Considerations with Dr. Aaron Gerds 21:01

7M ago21:01

21:01

On this episode, we hear from Aaron Gerds, MD of the Cleveland Clinic about what to expect when starting treatment for polycythemia vera. He talks about setting treatment goals, monitoring treatment progress, how to have an open conversation with your doctor, and more on this episode of the PV Pod. Transparency Statement: The PV Cancer Podcast is p…

1
Preserving Tainted Blood History and Bath Bleeds 49:35

7M ago49:35

49:35

We’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed. Show Notes: Subscribe: The BloodStream Podca…

1
Replay: My Dad Has PK Deficiency 15:35

7M ago15:35

15:35

What does it mean when a parent has pyruvate kinase deficiency? On today’s episode we welcome back Nathan Thompson, a father with PK Deficiency. He has two daughters. He’s joined today by his daughter Zoe. Here, we learn about parenting with PKD and all of the challenges associated with it. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a…

1
Replay: Cooley’s Anemia Foundation Family Conference: A Teen Conversation 45:35

7M ago45:35

45:35

On this episode we’re live in Los Angeles, California from the Cooley’s Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia. To learn more about Cooley’s Anemia Foundation, click this link. SHOW DESCRIPTION Thal Pals: The Alpha Bet…

1
Shakeup at HFA and a brand new Gene Therapy segment! 45:27

7M ago45:27

45:27

It’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on …

1
SNL screws up sickle cell. 40:35

7M ago40:35

40:35

We’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We’ll get into it all, AND MORE, on this episod…

1
Sickle Cell Advocacy with Miss Teen Virginia, Ayana Johnson 32:09

8M ago32:09

32:09

On this episode of Cheat Codes: A Sickle Cell Podcast, we speak with Ayana Johnson. In addition to being a sickle cell warrior, Ayana is also Miss Teen Virginia ‘22, a teen ambassador of the SCDAA and founder of Ay’s Hope Cells. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are…

1
The World Health Organization (WHO) gets it wrong 33:41

8M ago33:41

33:41

The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time. Show Notes: Subscr…

1
New Horizons in PNH 20:35

9M ago20:35

20:35

Explore the current standards of care, best practices, and innovative therapies for PNH in our final episode. Stay up-to-date with the latest advancements that are shaping the future of PNH treatment and patient care. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. This podcast was independently cr…

1
Peak Registry 27:02

9M ago27:02

27:02

On this episode, Dr. Rachael Grace is in conversation with Carl Lander, Chair of the Steering Committee for the Peak Registry and International Collaboration Director of Thrive with Pyruvate Kinase Deficiency. Here they discuss the latest with the Peak Registry. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinas…

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