BloodStream
BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
info_outline
On the Shoulders of Giants is a hit (!) and I’m Fine is back
04/26/2024
On the Shoulders of Giants is a hit (!) and I’m Fine is back
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: Presenting Sponsor: Takeda, visit to learn more. On the Shoulders of Giants Film Watch the movie and host a screening: Beyond our Blood Watch the short films and download the facilitation guide: Connect with BloodStream Media:
/episode/index/show/bloodstream/id/30957213
info_outline
New NBDF CEO, Phil Gattone
04/12/2024
New NBDF CEO, Phil Gattone
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: Presenting Sponsor: Takeda, visit to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/30786298
info_outline
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman
03/22/2024
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman
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 member, Ricardo Ramirez. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/30448163
info_outline
Highlights from ASH with Dr. Akshat Jain
03/08/2024
Highlights from ASH with Dr. Akshat Jain
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: Presenting Sponsor: Takeda, visit to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/30262048
info_outline
HFA CEO Dan Kelsey and Rare Disease Day tribute
02/23/2024
HFA CEO Dan Kelsey and Rare Disease Day tribute
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: Presenting Sponsor: Takeda, visit to learn more. Check out the hosting Bombardier Blood Everyday Life Foundation This Rare Disease Day segment is brought to you by Genentech. Genentech has several resources to help caregivers navigate hemophilia including stories from other members in the community. Please visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/30072253
info_outline
NBDF welcomes new CEO; HFA responds
02/09/2024
NBDF welcomes new CEO; HFA responds
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: Presenting Sponsor: Takeda, visit to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/29865143
info_outline
Preserving Tainted Blood History and Bath Bleeds
01/26/2024
Preserving Tainted Blood History and Bath Bleeds
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: To learn more about the Committee of Ten Thousand and to get involved, visit Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/29637553
info_outline
Shakeup at HFA and a brand new Gene Therapy segment!
01/12/2024
Shakeup at HFA and a brand new Gene Therapy segment!
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 gene therapy (whoo!) - all this and more! Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. Join the Movement - Equity for Women with Bleeding Disorders CHES - Take Action Today! - Click It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/29448468
info_outline
SNL screws up sickle cell.
01/04/2024
SNL screws up sickle cell.
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 episode. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I’m Fine and Elite Athletes are presented by @SanofiUS Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community. Watch led by Patrick with The National Bleeding Disorders Foundation Connect with BloodStream Media:
/episode/index/show/bloodstream/id/29331903
info_outline
The World Health Organization (WHO) gets it wrong
12/08/2023
The World Health Organization (WHO) gets it wrong
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: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I’m Fine and Elite Athletes are presented by @SanofiUS Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community. Watch led by Patrick with The National Bleeding Disorders Foundation Connect with BloodStream Media:
/episode/index/show/bloodstream/id/28980323
info_outline
The Dark Side of Resilience + The Gratitude Game
11/24/2023
The Dark Side of Resilience + The Gratitude Game
Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more.
/episode/index/show/bloodstream/id/28694638
info_outline
Resisting Change and Holiday Dynamics
11/10/2023
Resisting Change and Holiday Dynamics
Amy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I’m Fine is presented by @SanofiUS Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community. Segment brought to you by Genentech, please visit to learn more. Watch led by Patrick with The National Bleeding Disorders Foundation Connect with BloodStream Media:
/episode/index/show/bloodstream/id/28573978
info_outline
Introducing PNH: Facts, Fiction & FYI!
11/03/2023
Introducing PNH: Facts, Fiction & FYI!
The BloodStream Podcast is off this week but we have something very special for you. Introducing . Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. Subscribe to .
/episode/index/show/bloodstream/id/28379573
info_outline
Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams
10/27/2023
Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams
Mosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I’m Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE from Believe Limited. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I’m Fine and Elite Athletes with Hemophilia are presented by @SanofiUS Sanofi seeks to expand the idea of what’s possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia. Reimagine what’s possible by visiting Rareblooddisorders.com to hear more about Sanofi’s dedication to the bleeding disorder community. Watch led by Patrick with The National Bleeding Disorders Foundation Connect with BloodStream Media:
/episode/index/show/bloodstream/id/28432733
info_outline
Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset
10/13/2023
Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset
We’re back with another episode of BloodStream featuring Maya Bloomberg’s 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I’m Fine segment with Mark Skinner. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at Connect with BloodStream Media:
/episode/index/show/bloodstream/id/28304168
info_outline
Dr. Akshat Jain and NHL coach David Quinn
09/25/2023
Dr. Akshat Jain and NHL coach David Quinn
Dr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I’m Fine with a spotlight on–leadership. Be careful, leaders, we’re coming for ya! Show Notes: Subscribe: Watch Redefining Impossible for free Presenting Sponsor: Takeda, visit to learn more. Elite Athletes and I’m Fine segments presented by @Sanofi Connect with BloodStream Media:
/episode/index/show/bloodstream/id/28104797
info_outline
Embracing Change in Hemophilia Care and Back to School
09/08/2023
Embracing Change in Hemophilia Care and Back to School
Amy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I’m Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us! Show Notes: Subscribe: Back to School Resources at Watch Redefining Impossible for free Presenting Sponsor: Takeda, visit to learn more. Elite Athletes segment presented by @Sanofi Connect with BloodStream Media:
/episode/index/show/bloodstream/id/27973923
info_outline
Patrick and Amy’s BDC Recap!
08/25/2023
Patrick and Amy’s BDC Recap!
Patrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We’ll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different experiences. Also, we’ll premiere the first Elite Athletes segment that highlights community members from the Redefining Impossible film. Show Notes: Subscribe: Watch Redefining Impossible for free Presenting Sponsor: Takeda, visit to learn more. Elite Athletes segment presented by @Sanofi Connect with BloodStream Media:
/episode/index/show/bloodstream/id/27844284
info_outline
Taylor Swift changes Amy’s life, plus a new segment, and other stuff.
08/11/2023
Taylor Swift changes Amy’s life, plus a new segment, and other stuff.
Don’t worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I’m Fine. This new segment aims to challenge our “normals” and truly consider the possibilities. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. I'm Fine presented by @Sanofi Take a deeper at LevelsMatter.com. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/27716394
info_outline
NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren
07/27/2023
NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren
The National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don’t miss this one! Show Notes: Subscribe: You can do three practical things to help further the campaign for better treatment for women with bleeding disorders: 1) sign the petition at change.org: 2) Head over to to submit your recommendations for good doctors and hospitals 3) Sign the '' recommendations at hemophilia.org Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/27585888
info_outline
It’s here: Gene Therapy for Hemophilia A
07/14/2023
It’s here: Gene Therapy for Hemophilia A
Patrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders. Show Notes: Subscribe: Listen to T! Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/27457722
info_outline
Music w/ Max Feinstein and FLOW with Jessica Lauren Richmond
06/23/2023
Music w/ Max Feinstein and FLOW with Jessica Lauren Richmond
Jessica Lauren Richmond, co-host of the popular FLOW podcast, joins us to discuss all things menstrual health and Amy finally gets to ask –So, how’s your FLOW? We also have James Maple back with a music and self-expression segment that spotlights on community member, Max Feinstein. Show Notes: Subscribe: to the FLOW podcast! Share your FLOW story with us! Tik Tok Instagram Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/27240057
info_outline
World Sickle Cell Day & Sing Me A Story
06/09/2023
World Sickle Cell Day & Sing Me A Story
Join us as we celebrate World Sickle Cell day on June 19th with contributor Maya Bloomberg, the HemeNP and a conversation with hematologist Dr. Mike Callaghan. Great stuff about equity in healthcare, clinical trial participation, the Sing Me a Story organization, and the Denver Nuggets in the finals. Don’t miss it! Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/27086709
info_outline
SHEmophilia, Music, and Michael Bishop
05/25/2023
SHEmophilia, Music, and Michael Bishop
We’ve got a new “SHEmophilia” audio segment brought to us by CHES, as well as Saverio Cimino featured in today’s music and expression segment. Then, Patricks catches up with community member, Michael Bishop. A great episode! Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at Connect with BloodStream Media:
/episode/index/show/bloodstream/id/26960808
info_outline
Fitusiran overview with Dr. Guy Young
05/12/2023
Fitusiran overview with Dr. Guy Young
Dr. Guy Young joins us for an overview on the newest non-factor replacement therapy for hemophilia A and B, still in clinical trials–Fitusiran. Maya Bloomberg, the HemeNP, is back and so is James Maple with a segment featuring community member and musical artist, Shelby Smoak. We’ll also get a sneak peak of a brand new documentary featuring members of our community! Show Notes: Subscribe: Follow Maya Bloomberg @thehemenp Check out to listen to more of Shelby Smoak Listen to Presenting Sponsor: Takeda, visit to learn more. Segment is brought to you by Genentech. To read about the efficacy and safety profile of this treatment, visit Connect with BloodStream Media:
/episode/index/show/bloodstream/id/26813679
info_outline
The Ethics of Gene Therapy and a conversation with Gunnar Esiason
04/28/2023
The Ethics of Gene Therapy and a conversation with Gunnar Esiason
Gunnar Esiason, son of NFL legend Boomer Esiason, shares his story of living with cystic fibrosis and becoming the advocate he is today. We also speak with Rich Gorman: ethicist (!) on the ethics of gene therapy. Josh reflects on the connection between physical and mental health on Let’s Talk. A packed episode! Show Notes: Subscribe: Learn more about Gunnar Esiason and cystic fibrosis ! Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer ! Follow the newest BloodStream contributor, : @thehemenp Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/26676876
info_outline
World Hemophilia Day and new music from Tamar Mitchell
04/14/2023
World Hemophilia Day and new music from Tamar Mitchell
A stacked episode with a new Maya Bloomberg (@TheHemeNP !) segment, music from community member Tamar Mitchell, and Patrick sits down with Dr. Z (Zolotnitsky !) to discuss his PT work it the hemophilia community. All that, and more, on this World Hemophilia Day episode of BloodStream Podcast! Show Notes: Subscribe: Celebrate on social media! Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer ! Listen here to Tamar Mitchell’s new EP: Follow the newest BloodStream contributor, : @thehemenp Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/26533206
info_outline
So, we hit a nerve
03/24/2023
So, we hit a nerve
Patrick and Amy discuss the reaction to Patrick’s viral Warning to the Community and we can all agree that we struck a nerve! Also, our first segment with Maya Bloomberg, the @HemeNP where she discusses anemia. Plus, Blood Brother John Christen sharing his work, Bleeding China and the latest installment of Let’s Talk. Show Notes: Subscribe: Check out on Substack by Blood Brother, John Christen Follow the newest BloodStream contributor, : @thehemenp Presenting Sponsor: Takeda, visit to learn more. Let’s Talk shares tips on how to care for your own or someone you love’s mental health and strives to eliminate the stigma associated with this discussion within the bleeding disorders community. Visit Letstalkmh.com and click Resources. Brought to you by Sanofi Connect with BloodStream Media:
/episode/index/show/bloodstream/id/26320266
info_outline
Own Your Path
03/10/2023
Own Your Path
What does taking ownership of your bleeding disorder look like? Patrick shares his thoughts and NHF’s education staff, Brendan Hayes and Heather Hicks join us to debut a new program that could change the game. Also, we introduce Maya Bloomberg, a certified nurse practitioner, who is addressing blood disorders through social media. A can’t miss episode! Show Notes: Subscribe: Take control of your health care with NHFs ! This app-based program will provide you with information to navigate life with a bleeding disorder. Being able to stay on top of your treatment is easier if you are able to manage your stress, get enough sleep, move your body, and stay on top of your nutrition. Follow the newest BloodStream contributor, : @thehemenp Presenting Sponsor: Takeda, visit to learn more. Segment is made possible by Genentech. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/26178483
info_outline
Rare Disease Day and Living in the Almost
02/24/2023
Rare Disease Day and Living in the Almost
We recognize and celebrate Rare Disease Day on BloodStream! A day to raise awareness, share your story, and appreciate the community we find ourselves in. We’ll also get an interview with community member, Murai Johnson, to honor of Black History Month and Josh is back with another Let’s Talk: Living in the Almost. Show Notes: Subscribe: Presenting Sponsor: Takeda, visit to learn more. Connect with BloodStream Media:
/episode/index/show/bloodstream/id/26029518