Bloodstream

There is a women’s movement a brewin’ and Patrick & Amy have the scoop! Special guest Ashley Gregory is here to tell us all about it! Plus, Amy has a diagnosis of her own to talk about, and Jessica brings us back to The Well for a segment on growth featuring community member, Michelle Conde.   Presenting Sponsor: Takeda (bleedingdisorders.com) Episode Advertiser: CSL Behring (portraitsofprogress.com)   Learn more about FAIR! Contact [email protected]. Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast Listen to the latest from BloodStream’s FLOW podcast To learn more about FAIR, Females Are Important to be Recognized, contact Ashley Gregory. The Bloodstream Podcast is also brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

BloodStream welcomes Greig Blamey, a physiotherapist from Winnipeg, Canada and the lead investigator and author of Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers (A fantastic interview!). Plus, Patrick learned something at his recent HTC visit and the latest Let’s Talk mental health segment, featuring Joshua Sterling Bragg, on growing, evolving, and taking baby steps.   Show Notes:   Subscribe to BloodStream Podcast   Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers: Click HERE   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   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStr

Comedy writer Dru Johnston and mountaineer Chris Bombardier join Patrick and Amy for a discussion about the Making of The Final Summit, BloodStream Media’s podcast exploring what it means to chase a dream, achieve a dream, and realize then that the work has only just begun. We’ll also discuss the Celebration of Life for Val Bias and hemophilia A gene therapy approval for Europe. Show Notes:   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick is joined by dynamic duo, Dr. Kevin Kuo and Dr. Hanny Al-Samkari who share more about Alpha and Beta Thalassemia, a sister blood disorder to hemophilia. Plus, we’ll get an update on Patrick’s chronic pain & Amy’s writing as well as a brand new Let’s Talk segment on aging and changing.    Show Notes: Let’s Talk is brought to you by Sanofi Metal Heath Educational Resources  Visit Shareyourwhy.com to meet the Sanofi CoRe team and hear from them and members of the community about their story and passion for the hemophilia community.   Portraits of Progress   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Patrick and Amy are joined by three of the most prolific and committed rare disease podcasters out there: Effie Parks from Once Upon A Gene, Kyle Bryant from Two Disabled Dudes, and Bo Bigelow from Stronger Every Day. Those three titans behind the mic join us for a candid discussion about patient centricity, we touch on some recent news, FLOW’s Jessica Lauren Richmond is back with the latest installment of The Well.   Show Notes: Subscribe to: Once Upon a Gene 2DD Stronger Everyday   Recent novel therapy news:   CSL Behring gene therapy makes comeback after hold for FDA priority review   BioMarin delays planned FDA filing for hemophilia gene therapy   FDA Grants Breakthrough Therapy Designation to BIVV001 for Hemophilia A Treatment   Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   The Bloodstream Podcast is brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com    Subscribe to BloodStream Podcas

Women with mild hemophilia, vWD, and gene therapy were topics of discussion at The World Federation of Hemophilia’s World Congress that took place earlier this month in Montreal, Canada and Patrick and Amy were there! Hear about it as well as planning for the summer and our latest Let’s Talk mental health segment led by Believe Limited’s Joshua Sterling Bragg on loss.   Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   The Bloodstream Podcast is brought to you in part by a new educational gene therapy resource from CSL Behring called HemEvolution.  To learn more, check out www.HemEvolution.com   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick and Amy hosted a LIVE Journey to Joint Health panel at HFA with eight blood brothers who shared their experience participating in the HFA led physical fitness challenge and now you can listen in! You’ll also hear from HFA CEO Sharon Myers and Board Chair Allie Ritcey, and we’ll cap today’s episode off with our second installment of The Well, a holistic wellness segment led by FLOW podcast host Jessica Lauren Richmond. Show Notes:   HFA Symposium 2022   Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   Segment Sponsored by Genentech: Visit https://www.hemlibra.com to learn more.   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

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 [email protected]. 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 inhib

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 

We hear from Save One Life and the World Federation of Hemophilia on what to expect in 2022, as well as some gene therapy trial updates. Patrick and Amy speak about the loss of Val Bias and preview a special episode honoring his life.  Show Notes: Presenting Sponsor: Takeda Subscribe to BloodStream Podcast: Link Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

What’s the end of the year without Top Ten lists? Patrick and Amy did their own spin on the end-of-year Top Ten lists and you can’t miss it! We list our favorite episodes across the BloodStream Media network during 2021 and hear Patrick’s top discoveries since becoming vegetarian.  Show Notes: Presenting Sponsor: Takeda Subscribe to BloodStream Podcast: Link Top Ten BloodStream Media Episodes of 2021 Cheat Codes | What Just Happened - Best of Sickle Cell Conferences, #FSCDR21: Link FLOW | What do hormones do?: Link BloodStream | Best of BloodStream @ BDC 2021: Link Cheat Codes | Impact Players on Third and Long: Santonio Holmes and Martenzie Johnson: Link The Pain Pod | “Pushing Through the Pain” Link Once Upon a Gene | How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue and Decision Fatigue with Counselor Rose Reif: : Link BloodStream: The Birth Story: Welcome Vivian Bea! Link FLOW | Men + Menstruation: Link BloodStream: Howlin' Rays, coffee's th

Patrick and Amy welcome Dr. Len Valentino, CEO with The National Hemophilia Foundation and HFA CEO Sharon Meyers to give listeners a review of 2021 and lookahead to 2022.  Show Notes: Presenting Sponsor: Takeda Subscribe to BloodStream Podcast: Link The National Hemophilia Foundation: Link Hemophilia Federation of America: Link Our Segment this month is made possible by Genentech Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter