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Ep. 27: August 20, 2018 - w/ Wheels for the World

BloodStream

Release Date: 08/20/2018

Val Bias, a tribute: Val Bias, a tribute: "Life's work is in the getting there."

BloodStream

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: Subscribe to BloodStream Podcast:   Buffalo New Obituary  Val Bias, 63, crusader for better care for those with hemophilia and...

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Save One Life and WFH plus updated gene therapy trial news! show art Save One Life and WFH plus updated gene therapy trial news!

BloodStream

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. 

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Patrick and Amy’s Top Ten Top Ten Lists of 2021 show art Patrick and Amy’s Top Ten Top Ten Lists of 2021

BloodStream

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.

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State of the Organizations w/ Dr. Len Valentino & Sharon Meyers show art State of the Organizations w/ Dr. Len Valentino & Sharon Meyers

BloodStream

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: Subscribe to BloodStream Podcast: The National Hemophilia Foundation: Hemophilia Federation of America: Our Segment this month is made possible by Genentech Connect with BloodStream Media:    

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Diversity, Equity, and Inclusivity in Bleeding Disorders w/ Connie Montgomery show art Diversity, Equity, and Inclusivity in Bleeding Disorders w/ Connie Montgomery

BloodStream

Patrick and Amy welcome onto the show Connie Montgomery, a retired occupational therapist, active volunteer, and person living with Factor VII deficiency, who joins BloodStream contributor and social worker Alex Abreu Boria for an open conversation on issues and experiences related to diversity, equity, and inclusion in bleeding disorders. Show Notes: Presenting Sponsor:   Subscribe to BloodStream Podcast:   Patient informed consent article: Pfizer and Sangamo’s gene therapy trial paused: Connect with BloodStream Media:    

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Informed consent for hemophilia gene therapy w/ authors Laurence Woollard, Dakota Rosenfelt, and Richard Gorman show art Informed consent for hemophilia gene therapy w/ authors Laurence Woollard, Dakota Rosenfelt, and Richard Gorman

BloodStream

Patrick and Amy are joined by hemophilia patients and advocates Laurence Woollard, Dakota Rosenfelt, and Richard Gorman to discuss their recently published article, Improving patient informed consent for haemophilia gene therapy: the case for change. Show Notes: Presenting Sponsor: Subscribe to BloodStream Podcast: Patient informed consent article: Pfizer and Sangamo’s gene therapy trial paused: Connect with BloodStream Media:    

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Rare Patient Voice w/ Wes Michael + Let’s Talk w/ Josh Bragg show art Rare Patient Voice w/ Wes Michael + Let’s Talk w/ Josh Bragg

BloodStream

Wes Michael from Rare Patient Voice joins Amy and Patrick for a discussion about surveys and paid research opportunities in bleeding disorders before Josh Bragg returns with the latest installment of the Let’s Talk mental health segment.   Show Notes: PRESENTING SPONSOR: LET’S TALK SEGMENT SPONSOR: SEGMENT SPONSOR:   BLOODSTREAM MEDIA:   RARE PATIENT VOICE: LET’S TALK SEGMENT:   Connect with BloodStream Media:    

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Luke Pembroke gene therapy clinical trial catchup + pain and storytelling w/ Mel Forrest show art Luke Pembroke gene therapy clinical trial catchup + pain and storytelling w/ Mel Forrest

BloodStream

Hemophilia patient advocate and Haement Creative Director Luke Pembroke returns to BloodStream to discuss his gene therapy clinical trial experience and Mel Forrest, writer and host of The Pain Podcast joins to share her chronic pain learnings from Season 3 (out now!) as well as some of her journey in storytelling.    Show Notes: PRESENTING SPONSOR: SUBSCRIBE: CHECK OUT: FIND OUR HOSTS ON SOCIAL:   Episode Notes: THE PAIN PODCAST: LUKE PEMBROKE: ,   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on    

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Does chronic illness lead to feeling “less than?” show art Does chronic illness lead to feeling “less than?”

BloodStream

Amy and Patrick discuss how growing up with a chronic illness can lead to feeling “less than,” highlight recent articles on mild hemophilia and women in the community, and present the latest installment of Let’s Talk mental health with Joshua Sterling Bragg, featuring Dr. Emily Wheat.   Show Notes: PRESENTING SPONSOR: LET’S TALK SEGMENT SPONSOR: SEGMENT SPONSOR: BLOODSTREAM MEDIA:   LINKS FROM THIS EPISODE:   Find our Hosts on Social: @patrickjameslynch @boardo87   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on     ...

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Hematologists weigh in on the state of science in bleeding disorders show art Hematologists weigh in on the state of science in bleeding disorders

BloodStream

During last month’s Bleeding Disorders Conference, Believe Limited’s Science Fair  hosted a session that provided a brief overview of the state of science in bleeding disorders, featuring NHF CEO Len Valentino alongside hematologists and researchers Dr. Robert Sidonio and Dr. Jonathan Roberts. Audio provided courtesy of the National Hemophilia Foundation.   Show Notes: PRESENTING SPONSOR: SCIENCE FAIR SPONSOR:

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More Episodes

 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!

 

Exclusive Sponsor: Shire

 

Latest Ask The Expert Podcast: Ep. 17: Mental Health - w/ Debbie de la Riva - July 23, 2018

Latest Powering Through Podcast: Ep. 19 - Idaho w/ Preston Bowling, Skyler Openshaw, & Allie Cashel

 

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Community News In 60 Seconds

Like Segment: Before You Buy CBD Oil Online, Ask These Questions

 

Share Segment: Shari Luckey - Living in the shadows with Mild Hemophilia

Comment Segment:

Update on Shire Injunction Filing on Roche/Genentech

Court Rules on Shire/Roche Preliminary Injunction

 

Interview Segment: Laurie Kelley

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