hemophiliaa

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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enFebruary 23, 2024

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.

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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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enDecember 08, 2023

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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.

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WFH statement on the Israel-Palestine crisis

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

I’m Fine and Elite Athletes with Hemophilia are presented by @SanofiUS

Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation

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enOctober 27, 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:

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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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enSeptember 25, 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!

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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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enJuly 27, 2023

TWiV 1028: Asymptomatic SARS-CoV-2 infection and T cells

TWiV reviews approvals of the first gene therapy for severe hemophilia A in adults and a monoclonal antibody to prevent RSV respiratory disease in babies and toddlers, and a common allele of HLA that mediates asymptomatic SARS-CoV-2 infection through pre-existing T cell immunity due to previous exposure to common cold coronaviruses.

Hosts: Vincent Racaniello, Dickson Despommier, Alan Dove, Kathy Spindler, and Brianne Barker

Subscribe (free): Apple Podcasts, Google Podcasts, RSS, email

Become a patron of TWiV!

Links for this episode

MicrobeTV Discord Server
First gene therapy for hemophilia A approved (FDA)
Luxurna, gene therapy for vision loss (FDA)
Anti-RSV monoclonal antibody approved (FDA)
Trial of single-dose Nirsevimab (NEJM)
Letters read on TWiV 1028
Timestamps by Jolene. Thanks!

Weekly Picks

Dickson – Phoenix hits 110 degrees for the 19th day in a row, setting national record
Brianne – James Webb Telescope One Year Anniversary Photo
Kathy – Drone awards photos
Alan – WHO Film Festival winners
Vincent – Thinking, Fast and Slow by Daniel Kahneman

Listener Picks

David – The Mass Extinction Debates: A Science Communication Odyssey

Intro music is by Ronald Jenkees

Send your virology questions and comments to twiv@microbe.tv

This Week in Virology

enJuly 23, 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:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Sing Me A Story

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enJune 09, 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:

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Saverio Cimino’s Instagram

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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enMay 25, 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:

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Celebrate World Hemophilia Day on social media!

Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!

Listen here to Tamar Mitchell’s new EP:

Instagram

Apple Music

Spotify

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enApril 14, 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:

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Check out Bleeding China on Substack by Blood Brother, John Christen

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com 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

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enMarch 24, 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:

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Take control of your health care with NHFs Own Your Path program!

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, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is made possible by Genentech.

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About The Infected Blood Inquiry - The Haemophilia Society

enMarch 10, 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:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enFebruary 24, 2023

Washington Days and Amy’s Big Win

BloodStream welcomes back NHF Vice President of Public Policy, Nathan Schaefer to talk everything Washington Days and advocacy! Plus, an interview with community member and social worker, Mosi Williams and a new segment of The Well. Oh, and Amy and Patrick share some personal advocacy wins and bummers too!

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enFebruary 10, 2023

Connie Montgomery and a Let’s Talk Segment featuring Mike Hargett

BloodStream honors Black History Month with a series of interviews with community members and KOL’s Join us for this pop-up episode with Connie Montgomery as she shares her perspective with James Maple. Plus, Josh Bragg is back with another Let’s Talk featuring community member, Mike Hargett.

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enFebruary 03, 2023

Dr. Steven Pipe on HEMGENIX, hemophilia B’s first gene therapy

We’ve got Dr. Steven Pipe with us to discuss the first gene therapy approved for hemophilia B, HEMGENIX. As the lead investigator of the HEMGENIX trial, Dr. Pipe details what patients need to know about HEMGENIX and what questions to consider when speaking with their hematologist. A must listen episode!

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enJanuary 27, 2023

Legislative wins and losses & CDC’s Aditi Kantipuly

A legislative package was approved at the end of 2022 with several wins and several disappointments for the rare disease community–we talk about it! Also, we welcome Aditi Kantipuly, a Research Collaborator for the CDC for a chat about health equity. Plus, Jessica Lauren Richmond is back with The Well, a segment featuring 5 steps to make your new year’s resolutions stick.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

As part of H.R. 2617, Congress delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought for and will help speed efforts to develop effective therapies and expand access to care.

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enJanuary 13, 2023

A Year in Review with NHF CEO, Len Valentino!

It’s the final episode of 2022! Patrick gives an update on his ankle journey, through the good and the bad, PLUS a terrific interview with NHF CEO and President, Dr. Len Valentino. We’ll close with a Let’s Talk segment on focus on trauma, depressive swings featuring our own, Patrick James Lynch.

Watch Jonah Hill’s Stutz on Netflix

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. 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

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enDecember 23, 2022

Gene Therapy is Here (Kinda!)

The first gene therapeutic for hemophilia (specifically for hemophilia B) was approved last week, and with that –a new era of treatment options has begun! Amy and Patrick share first reactions to the approval news and toss out opinions on how this news may impact our community in 2023. We also have Michelle Rice with us to share how her work is continuing to bring access to treatment for rare disease patients. Plus, a new segment of The Well on Relationships.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

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enDecember 09, 2022

It’s gratitude season, plus takeaways from WFH Gene Therapy Roundtables!

In a terrific turn of events, Patrick got an invite to the prestigious WFH Gene Therapy Roundtable featuring a number of experts discussing the challenges and opportunities presented by gene therapy. So that means Patrick will report back all the key takeaways! And, it’s gratitude season, so naturally we share what we are most thankful for this year. Plus, a new Let’s Talk about dating and relationships.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

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enNovember 25, 2022

Are patient influencers a good thing?

A good one this week! Erin Willis, associate professor at the University of Colorado joins us to discuss the increasingly popular use of patient influencers in pharmaceutical marketing. The goal of her research is to explore how message design can influence people's understanding about their health and choices. Also, Jessica Richmond is back with another segment of The Well as she investigates how the past informs the present.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Genentech has local Clinical Education Managers (CEMs) who offer one-on-one support throughout your entire hemophilia journey.

To get in contact with a CEM, visit www.TalkToACEM.com

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