Libsyn Directory

Ep. 37: June 17, 2019 - w/ Amanda Bok

Release Date: 06/17/2019

BloodStream

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...

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

BloodStream

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:

Highlights from ASH with Dr. Akshat Jain

BloodStream

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...

HFA CEO Dan Kelsey and Rare Disease Day tribute

BloodStream

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...

NBDF welcomes new CEO; HFA responds

BloodStream

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...

Preserving Tainted Blood History and Bath Bleeds

BloodStream

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:

Shakeup at HFA and a brand new Gene Therapy segment!

BloodStream

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 ...

SNL screws up sickle cell.

BloodStream

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...

The World Health Organization (WHO) gets it wrong

BloodStream

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...

The Dark Side of Resilience + The Gratitude Game

BloodStream

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.

More Episodes

This month on The BloodStream Podcast, we breakdown “Clotting Factors: Aren’t They Basically All the Same?” from the May issue of the Parent Empowerment Newsletter (PEN), we discuss one physician’s social media crusade to tear down “fake health news,” we listen to Tabitha White’s story of becoming a hemo mom after losing her hemophiliac father to AIDS, we interview European Haemophilia Consortium Chief Executive Officer Amanda Bok, and Debbie de la Riva leads the latest A Moment For Mental Health segment. All that, and more, on Episode 37 of The BloodStream Podcast.

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