The Rare Impact Awards, hosted by the National Organization for Rare Disorders (NORD), take place on Friday October 9th at 7pmEST and will honor music legend Peter Frampton, Ohio Senator Sherrod Brown, and our very own Patrick James Lynch (amongst others)! NORD’s Director of Strategic Planning and Project Development Lisa Sarfaty joins to discuss the event, then Germantown Academy’s legendary basketball coach Jim Fenerty joins to talk about his four-decade long coaching career, his diagnosis, and the rare blood cancer awareness campaign he’s joined.

 

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Self-infuse from anywhere, advocacy wins in Texas, and what the death of Supreme Court Justice Ruth Bader Ginsburg could mean for the future of the Affordable Care Act (ACA) are all topics on today’s episode, plus, an interview with sickle cell and hemophilia expert hematologist Dr. Michael Callaghan, and a reading of a recently published article challenging the scrutiny of gene therapy clinical trials.

 

Presenting Sponsor: Takeda

Segment Sponsor: Genentech

 

NHF’s Blue Sky Initiative

 

Stop The Bleeding!’s Self-Infusion Episode

 

Aggregate of articles on Supreme Court vacancy. 

 

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Roy Ginder, the husband of notable AIDS and hemophilia advocate Jeanne White-Ginder, passed away early Wednesday morning. We pay tribute to Roy and share moving audio from a 2017 interview he gave to Patrick about the love of his life, Jeanne White.

 

Presenting Sponsor: Takeda

 

Fundraiser to support Jeanne White-Ginder

 

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The Disorder Channel and DISORDER: Rare Disease Film Festival co-founder and rare disease parent Bo Bigelow joins BloodStream to discuss a recent article on the parents who are navigating the “wilderness” of rare genetic disease and to preview The Disorder Channel’s work at the upcoming Global Genes Patient (un)Summit!

 

Presenting Sponsor: Takeda

 

The Wilderness of Rare Genetic Disease and the Parents Navigating It

The Disorder Channel & Rare Disease Film Festival

Global Genes LIVE! A RARE Patient Advocacy (un)Summit!

Bo’s Stronger Everyday Podcast

Wheels for The World with Save One Life: Sign up today!

 

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Amy introduces The Believe 19,  a new segment with an interview with Rue Mapp, founder and CEO of Outdoor Afro. Outdoor Afro is a national organization celebrating and inspiring Black connections and leadership in nature. We’ll hear what their work is all about!  Also, Patrick and Natalie share their excitement to participate in Save One Life’s annual fundraiser, Wheels for The World. Listen in to celebrate giving back and learn more about different ways to contribute to the good work being done in our communities! 

 

Presenting Sponsor: Takeda

Learn More about Outdoor Afro: Outdoor Afro Website

Sign up for Wheels for the World: Save One Life 

Listen to the It’s in the Gene’s Podcast!: Gene Therapy Podcast

 

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We breakdown and react to a recent article on the role of child-abuse pediatricians and some of the dreadful outcomes that’ve come from the creation of this well-intended specialty.  Then NHF board member and blood brother John Faria joins Patrick to discuss his role in the recently launched HemeWork program.

 

Presenting Sponsor: Takeda

Segment Sponsor: Genentech

Article: When the Misdiagnosis Is Child Abuse

The Marshall Project 

HemeWork: Community Stories

 

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To the surprise of many, on August 19th the US Food and Drug Administration denied the first application for a one-time gene therapy for hemophilia A. Patrick and Amy process this major news then share soundbites from their conversations with doctors Valentino, Quon, Young, and Wang during #NHF2020's Science Fair about gene therapy, emicizumab, and novel therapies.

Presenting Sponsor: Takeda Response to FDA's Actions: HFA Statement The Science Fair is made possible by Spark Therapeutics 

Bombardier Blood is now available worldwide!  On release day, Patrick shares some "final thoughts" on the project, then turns the show over to Liz Manashil and Alrik Bursell's interview of him about the film for the Making Movies Is Hard podcast!    Presenting Sponsor: Takeda Bombardier Blood: Available now! Bombardier Blood Q&A w/ Anthony Rapp: More info! Making Movies Is Hard w/ Liz Manashil and Alrik Bursell: Subscribe!

 Patrick, Natalie, and Amy circle up to share highlights and personal takeaways from the National Hemophilia Foundation’s Virtual Bleeding Disorders Conference, which took place August 1st-8th via hemophilia.org. Listen in as the hosts recap some critical sessions, relive their favorite experiences, and share personal takeaways from #NHF2020!

Presenting Sponsor: Takeda

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With Believe Limited's Zoom(sical) about bleeding disorders only days from launch, director Katharine Lerner, musical director Paul Russell, and producer Jessica Lauren Richmond join Amy and Patrick for a candid conversation about how theater has changed their lives!

 

Presenting Sponsor: Takeda

Episode Sponsor: Genentech. Visit their new website: GenentechHemophilia.com

Watch Hemophilia: The Zoomsical!

 

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