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.
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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.
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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.
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Takeda, visit bleedingdisorders.com to learn more.
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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!
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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.
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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.
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Check out the Everyday Life Foundation hosting Bombardier Blood
Everyday Life Foundation Legislative Asks
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 www.thecommunityhelps.com to learn more.
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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:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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.
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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.
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To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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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!
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Join the Movement - Equity for Women with Bleeding Disorders
CHES - Programs for Women with Bleeding Disorders
Take Action Today! - Click HERE
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.
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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.
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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 "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
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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:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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 "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
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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.
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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 www.treathemA.com to learn more.
Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
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The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI.
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 PNH: Facts, Fiction & FYI.
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:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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 "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation
WFH statement on the Israel-Palestine crisis
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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:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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 www.ches.education
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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!
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Watch Redefining Impossible for free HERE
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Elite Athletes and I’m Fine segments presented by @Sanofi
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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!
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Back to School Resources at Steps for Living
Sickle Awareness Month Resources
Watch Redefining Impossible for free HERE
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Elite Athletes segment presented by @Sanofi
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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:
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Watch Redefining Impossible for free HERE
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Elite Athletes segment presented by @Sanofi
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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.
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
I'm Fine presented by @Sanofi Take a deeper at LevelsMatter.com.
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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!
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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: Demand Equity in Healthcare for Women
2) Head over to CHES to submit your recommendations for good doctors and hospitals
3) Sign the 'MASAC Document 264' recommendations at hemophilia.org
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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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.
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Listen to The Final Summit Season 2 Podcast!
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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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.
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Listen and Subscribe to the FLOW podcast!
Share your FLOW story with us! How's Your Flow Calendly
Tik Tok @howsyourflow
Instagram @howsyourflow
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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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!
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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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:
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Presenting Sponsor:
Takeda, visit bleedingdisorders.com 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 www.ches.education
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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:
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Follow Maya Bloomberg @thehemenp
Check out https://shelbysmoak.com/ to listen to more of Shelby Smoak
Listen to PV Pod: Stories from the Marrow
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
Segment is brought to you by Genentech. To read about the efficacy and safety profile of this treatment, visit http://treathemophilia.com
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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!
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Learn more about Gunnar Esiason and cystic fibrosis here!
Listen to PV Pod: Stories from the Marrow!
Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!
Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp
Presenting Sponsor:
Takeda, visit bleedingdisorders.com to learn more.
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