Ep. 27: August 20, 2018 - w/ Wheels for the World
Release Date: 08/20/2018
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 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. Connect with BloodStream Media:info_outline Rare Disease Podcasters on Patient-Centricity and a new segment of The Well!
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: Recent novel therapy news: Presenting Sponsor: Takeda. Visit to learn more. The Bloodstream...info_outline Women prioritized at World Congress and coping with loss for Mental Health month
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 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...info_outline Journey to Joint Health Panel - LIVE from HFA!
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: Presenting Sponsor: Takeda. Visit to learn more. Segment Sponsored by Genentech: Visit to learn more. Connect...info_outline Live from HFA w/ Keynote Speaker, Zander Masser!
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 Unburying My Father, the book will be released on June 12, 2022. Learn more or...info_outline Live from HFA w/ Keynote Speaker, Adar Cohen!
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 ! Presenting Sponsor: Takeda. Visit to learn more. Connect with BloodStream Media:info_outline HFA Preview, Honoring Those We’ve Lost, and an Extended Teaser!
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 to learn more. Connect with BloodStream Media:info_outline Brian O’Mahony, Origins of Ankle Pain, and Foam Rollers!
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: Presenting Sponsor: Takeda. Visit to learn more. Connect with BloodStream Media: ...info_outline Solo Dad Life, MASAC Meeting, and Thalassemia in the News(room)!
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 to learn more. ...info_outline Living Beyond the Diagnosis with Kristin Eilenberg of EE Minds, a program designed for parents who have children with medical conditions, plus HFA is back and a chat with Josh Bragg!
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: Energizing & Empowering Minds Learn and for a program Connect with BloodStream Media:info_outline
This month on The BloodStream Podcast, Shari Luckey shares her “Living in the Shadows with Mild Hemophilia” story, Natalie presents an article on the things you need to know before purchasing CBD oil, we bring to you updates on the legal dispute between Roche/Genentech, and we hear from participants and organizers of the Wheels For The World Barry Haarde Memorial Bike Ride. All that and more on Episode 27 of The BloodStream Podcast!
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Share Segment: Shari Luckey - “Living in the shadows with Mild Hemophilia”
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