BloodStream

On this episode of BloodStream, hosts Patrick James Lynch and Amy Board share stories of remarkable achievement and progress in bleeding disorders. Hear from Tim Stowers, a severe hemophilia A patient who has summited Everest and completed solo English Channel swims, as he shares his journey of resilience and determination. Plus, get the latest updates on Star Therapeutics’ lead VWD therapy, now entering a pivotal Phase 3 trial, and learn how patients can help shape the first validated VWD quality-of-life assessment tool.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes:   Star’s Pivotal Phase 3 Study (VIVID-6) Initiated:   VGA039 is the first subcutaneous therapy, dosed once monthly, that has the potential to address all types of VWD and all types of bleeds. It has also received Fast Track and orphan drug designation from the United States Food and Drug Administration (FDA). The additional investment announced today supports our continued global clinical expansion as we advance into our pivotal, Phase 3 trial.   Explore clinical trial eligibility: visit THIS WEBSITE    To participate in the first validated VWD quality of life patient-reported outcome tool, please e-mail Judith.Monickaraj@chet.rochester.edu to learn more. Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

On this episode of BloodStream, we explore the World Health Organization’s updates to the Essential Medicines List and what they mean for bleeding disorders care. Hemophilia B mom and creator Jesseca Lockie shares her perspective on advocacy and storytelling online, while Domenic and his mom open up about how gene therapy has transformed his daily life. Real stories, important updates, and conversations shaping the bleeding disorders community.   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. Show Notes:   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

Is there a new treatment for von Willebrand Disease on the horizon? This week on BloodStream, we’re joined by Jess Swann and Dr. Ben Kim from Star Therapeutics to talk about their promising pipeline and what it could mean for the vWD community. From science to support, they share their commitment to innovation and the people at the heart of it all. Plus, Patrick and Amy catch you up on the latest happenings—including the premiere of Dismissed!    Don’t miss this insightful, energizing episode that dives into the future of bleeding disorders care.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes:   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

Edward Rogoff, Blood Brother, NY chapter board member, and author of Scary Diagnosis, joins us on today’s BloodStream. We hear the powerful stories behind community tattoos and get an update from PJL on his ankle surgery and recovery. This episode is full of resilience, creativity, and the strength we find in unexpected places. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: http://www.linkedin.com/in/edward-rogoff-6624366   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

Do you ever wonder who’s actually getting gene therapy around the world? So have we! Dr. Hank Greely from Stanford and Simon Fletcher, a nurse and PhD Candidate from Oxford, break it down in a way that’s eye-opening and real. Then stick around for Dr. Radek Kaczmarek’s update on the latest game-changing research. Two fascinating chats, one episode, this is BloodStream you don’t want to miss!   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. Show Notes:   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

What do a heartfelt short film, a Hollywood actress, and a powerful community story all have in common? This week’s BloodStream Podcast. Actress Sami Rappoport shares how her grandfather’s life with hemophilia inspired her latest project, and Dr. Joanna Davis sits down with Barb Forss and Jeffrey Moualim for a conversation you won’t want to miss. Jeffrey Moualim, Barbara Forss and Joanna Davis, M.D., discussion is in conjunction with CHESFoundation/LadyBugs Program   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Phil Gattone joins the latest BloodStream Podcast to preview NBDF’s upcoming Bleeding Disorders Conference, coming mid-August. Plus, Amy and Patrick take a trip down camp memory lane, sharing summer stories from their days at hemophilia camp. Tune in for a mix of updates and nostalgia.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film. Show Notes:   Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Our bud, Max Feinstein, is back with us to share the outcome of his elbow surgery and he surprises us with a cover of Hemophiliac of Love (!!). Plus, the most pressing question when it comes to gene therapy for hemophilia B: How long does it last? Hanna does a deep dive into that very question with guest, Dr. Andrew Davidoff.   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. Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

Rick Lindfors is cool. He lives with Type 3 von Willebrand and is in the Minnesota Search and Rescue Dog Association. He sits down with Patrick to chat about how he saw it as an opportunity to give back to his younger self, who, for a time, didn't have anyone coming to rescue them. Listen in to his inspiring story - only on BloodStream!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes:   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

Dr. Erik Berntorp (medical doctor, researcher, and professor at Lund University in Sweden) joins us to discuss something special related to von willebrand disease and Matthew Zachary, award-winning Cancer Maverick, Keynote Speaker, and Pioneering Podcaster sits down with Patrick to chat all things advocacy and media!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes:   Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok