BloodStream

Join Patrick and Amy for another LIVE episode from HFA Symposium where we have the pleasure of speaking with keynote speaker, Zander Masser. Zander’s father, Randy, lived with severe hemophilia B until he passed from AIDS-related illnesses in 2000 at the age of 52. Twenty years later, Zander unburied 10,000 slides from Randy’s career as a professional photographer and explores his process of exploring grief through creativity. Hear his incredible story right here on BloodStream. Show Notes: Learn more about Randy Masser Unburying My Father, the book will be released on June 12, 2022. Learn more or pre-order HERE!   HFA Symposium 2022   Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick and Amy are LIVE from HFA Symposium! Listen in to keynote speaker, Adar Cohen, as he shares how the strength of our communities relies on our willingness and our ability to have the big, complicated conversations in our work, in our families, and in our civic lives.We’ll also have a new Let’s Talk segment with Josh Bragg. A great episode about those “big conversations” we often avoid. Show Notes: Learn more about Adar Cohen! HFA Symposium 2022 Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

In this mini episode, Patrick and Amy run through Believe & BloodStream presence at the Hemophilia Federation of America’s Symposium before speaking about some major April anniversaries and introducing the new season of BloodStream Media’s Pain Podcast! Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast HFA Symposium 2022 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick spends time with advocacy leader and patient, Brian O’Mahony, about issues facing the community in Ireland and his updates on his experience as a person with hemophilia who’s been dosed with gene therapy. Amy speaks with Dr. Ben Samelson-Jones about the use of Twitter in hemophilia and we have a new segment! Listen in for the debut of a brand new monthly segment, The Well, featuring Jessica Lauren Richmond of BloodStream’s FLOW podcast. Show Notes: Article from Hemophilia News Today: Ankle Joint Damage in Hemophilia Common, But Not Linked to Pain   Digital haemophilia: Insights into the use of social media for haemophilia care, research and advocacy Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick and Amy welcome news producer and thalassemia advocate Nina Maria Baldalamenti to the show as well as blood brother and frequent flier of BloodStream, Luke Pembroke, who reveals he’s on the brink of leaving for, dare we say, an adventure of a lifetime (!!). They also discuss the recent MASAC meeting (Medical and Scientific Advisory Council of NHF), present the latest Let’s Talk mental health segment with Josh Bragg and play clips on novel therapies from the latest episode of Global Hemophilia Report.   Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   Let’s Talk Sponsor: Sanofi. Visit LetsTalkMH.com for mental health resources Subscribe to BloodStream Podcast Global Hemophilia Report - new episode! Haemcast Podcast w/ Luke Pembroke and PJL! Max Feinstein on 2DD Podcast MASAC Information Learn more about Thalassemia! Catch up on previous segments of Let’s Talk!   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Hear from Kristin Eilenberg of EE Minds about their state-of-the-art programs designed for parents who have children with medical conditions. With courses such as “I Am The Parent, Your New Normal, and Empowerment” and “Rules of the Road and Meaningful Consequences”, EE Minds is changing the way parents parent. Plus, HFA is back and a chat with Josh Bragg! A great episode! Show Notes: Subscribe to BloodStream Podcast Energizing & Empowering Minds Living Beyond The Diagnosis Testimonials Program Overview Learn and register for a program Register for HFA Symposium  Joint Damage Seen in Hem A Patients With Milder Disease, Few Bleeds Connect with BloodStream Media: BloodStreamMedia.com

It’s Rare Disease Day so we’re honoring our caretakers with a special interview with Brendan Hayes, a hemophilia mom who has had the opportunity to work with other rare disease groups as a national advocate. We’ve got another Let’s Talk segment featuring Josh Bragg’s journey to finding joy. A feel good, can’t miss episode!  Show Notes: Explore Rare Disease Day and Share Your Colors! Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Check Out Season One of Let’s Talk, a segment devoted to mental health in the bleeding disorder community.  Let’s Talk - a film by Believe Limited, made possisble by Sanofi Find Resources at Mental Health Matters Too Presenting Sponsor: Takeda Subscribe to BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick and Amy welcome new FLOW co-host and lady bleeder, Sarah Watson AND community member, Jim Mueller, who shares some cool ideas about financial planning. We’ll also introduce our new podcast The Global Hemophilia Report with Dr. Donna DiMichele.  Show Notes: Presenting Sponsor: Takeda Subscribe to BloodStream Podcast: Link Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution: Link HR5801 - The Help Ensure Lower Patient Copays Act: Link The Global Hemophilia Report: Link Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia A and caregivers of children ages 1-17 years old with hemophilia A (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at GJP@tribecacom.com. Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia B and caregivers of children ages 1-17 years old with hemophilia B (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at gjp@tribecacom.com. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Dr. Guy Young is here to break down the latest data out of the BioMarin gene therapy clinical trial. We get a new Let’s Talk segment featuring Josh Bragg AND Patrick reveals a big secret. Don’t miss it! Show Notes: Presenting Sponsor: Takeda Subscribe to BloodStream Podcast: Link BioMarin plans return to FDA with updated data on hemophilia gene therapy (BioPharmaDive): Link BioMarin's hemophilia A gene therapy hits goal in phase 3, teeing up FDA filing despite durability doubts (Fierce Biotech): Link Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

On December 30th, 2021, longtime bleeding disorders and HIV/AIDS advocate and former National Hemophilia Foundation CEO Val Bias passed away suddenly at age 63. This special episode features audio from numerous interviews that Val gave to BloodStream Media and Believe Limited across the years; it’s Val’s life, in Val’s own words, set alongside personal reflections from hosts Amy Board and Patrick James Lynch.  Show Notes: Presenting Sponsor: Takeda Subscribe to BloodStream Podcast: Link   Buffalo New Obituary  Val Bias, 63, crusader for better care for those with hemophilia and HIV/AIDS: LINK World Federation of Hemophilia WFH VP Medical Glenn Pierce pays tribute to Val Bias: LINK National Hemophilia Foundation NHF Mourns the Loss of Longtime CEO, Val Bias: LINK Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter