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BloodStream

BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
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Now displaying: 2020
Dec 25, 2020

Patrick and Amy are joined by acclaimed pediatric hematologist and researcher Dr. Robert Sidonio for his take on the state of bleeding disorders as we close out this most unusual year.  Happy Holidays!

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

FLOW, a BloodStream show for women - http://bit.ly/BSMFlow

DHAMMA (Vipassana) - http://bit.ly/DhammaBSM

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - bit.ly/BSPYT20



Dec 18, 2020

Patrick and Amy are joined by National Hemophilia Foundation’s (NHF) VP of Public Policy Nathan Schaefer and Senior Manager of Government Relations Bill Robie to discuss key differences between state and federal advocacy, unique challenges to state-level advocacy, and how NHF’s State Based Advocacy Coalitions (SBAC) program assists chapters with state advocacy.

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

NHF’s State Based Advocacy Coalitions (SBAC) Program: bit.ly/NHFSBAC

 

HERTZ on Cheat Codes: bit.ly/cheatcodespod

PRESTON on Journeys: bit.ly/BloodStreamJourneys

GENE THERAPY article: bit.ly/GTfactor

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - bit.ly/BSPYT20

 

 

Dec 11, 2020

Patrick and Amy are joined by hemophilia and sickle cell expert Dr. Michael Callaghan who provides major takeaways from #ASH20. They also discuss actor Amanda Fuller’s disclosing her son’s hemophilia and the Irish Haemophilia Society’s CEO Brian O Mahony disclosing his enrollment in a gene therapy clinical trial. 

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

AMANDA FULLER’s IG post: bit.ly/AFullerHemB

PEOPLE Magazine story: bit.ly/AFullerPeople

 

DIVERSITY & Inclusivity in research: bit.ly/BMSDICT

 

BRIAN O MAHONY’s gene therapy experience: bit.ly/BrianGThemB

IRISH TIMES story: bit.ly/ITFunCure

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - bit.ly/BSPYT20

Dec 4, 2020

Patrick and Amy discuss the importance of Giving Tuesday, the significance of #ASH20 (American Society of Hematology’s Annual Meeting), and they speak with a young man named Zachary who recently made an incredible commitment to Save One Life.

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

SUPPORT Save One Life: https://bit.ly/S1L2020

S1L SCHOLARSHIP Program - Philippines: https://bit.ly/S1LScholarshipPh

WORLD AIDS Day w/ Jeanne White-Ginder: https://bit.ly/JeanneWAD2020

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Dec 1, 2020

Jeanne joins Patrick for a special World AIDS Day interview to discuss the current state of HIV/AIDS, the impact of the Ryan White Care Act 30 years after the bill’s passage, her experience through COVID, and much more!

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

 

Nov 27, 2020

The BloodStream team shares gratitude, stories, and bizarre moments from Thanksgivings past, then Philadelphia Youth Basketball CEO Kenny Holdsman joins for a Believe 19 interview!

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

SEGMENT SPONSOR: Genentech - bit.ly/BloodlessBattle

TWITCH Rivals: bit.ly/2ZXZRTx

 

PHILADELPHIA Youth Basketball: bit.ly/PYBBSP20

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20



Nov 20, 2020

Natalie joins Patrick and Amy to discuss how coronavirus is impacting holiday plans, the Affordable Care Act’s Open Enrollment period- closing December 15th- and actor Damian Washington joins to tell us about his multiple sclerosis YouTube channel NoStressMS and much more!

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

DAMIAN WASHINGTON’s website: https://bit.ly/DWNoStress

 

ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar

NHF’s Insurance Toolkit: https://bit.ly/32MufSs

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20



Nov 13, 2020

Policy experts Johanna Gray, a principal lobbyist representing the National Hemophilia Foundation (NHF), and Nathan Schaefer, NHF’s Vice President of Public Policy, join Amy and Patrick to discuss what the election results mean for bleeding disorders advocacy going forward. Plus, we pay tribute to beloved community advocate Donald “Ziggy” Douglas, who passed away suddenly earlier this week.

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

LISTEN to BloodStream Journeys - https://bit.ly/BSJourneys

ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

 

 



Nov 6, 2020

Patrick and Amy discuss ICER’s recently published Evidence Report on Therapies for Hemophilia A as well as NHF’s Virtual Insurance and Reimbursement Conference. Then Amy interviews Nourbese Flint, the Policy Director for Black Women For Wellness, and we hear from the Assistant Secretary for Health, ADM Brett Giroir.

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

ICER’S EVIDENCE REPORT: http://bit.ly/ICERHemA2020

NHF’S INSURANCE CONFERENCE: http://bit.ly/InsurReimburse20

BLACK WOMEN FOR WELLNESS: http://bit.ly/bwwlaBSP

 

CHEAT CODES PODCAST: http://bit.ly/CheatCodesPod

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

 

#hemophilia #ICER #healthinsurance #blackwomenforwellness #bleedingdisorders #bloodstreampod



Oct 30, 2020

In this Mischief Night 2020 episode, Patrick and Amy are joined by Haunting Season creator and host Joshua Sterling Bragg to escape the world as we know it for a quick trip into the paranormal and unexplainable! That, plus an interview with a representative of the high school activist group Swab4USA.

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

HAUNTING SEASON: http://bit.ly/HSBSP20

 

SWAB 4 USA: http://bit.ly/Swab4USA

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Oct 23, 2020

Patrick, Amy, and Natalie share some announcements before Kollet Kouliaos, the National Hemophilia Foundation's Senior Director of Payer Relations, joins to discuss some recent and encouraging survey results regarding copays and out-of-pocket costs, then fresh off the Appalachian Trail, teen adventurer William Addison joins to tell us about his 2,200 mile hike benefitting Save One Life!

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

SEGMENT SPONSOR: Genentech - https://bit.ly/2FZ7K3P

 

Check out Twitch Rivals: https://bit.ly/2ZXZRTx 

 

Survey Results on Copay Assistance: http://bit.ly/CoPaySurvey

SOBO for Save One Life: http://bit.ly/SOBO4SOL

WFH’s new President, Caesar Garrido: http://bit.ly/WFHCesar

 

Check out the new podcast, Haunting Season: http://bit.ly/HSBSP20

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20



Oct 16, 2020

Patrick and Amy discuss the recently published, “100 Days Agenda: A Patient-First Blueprint” and are then joined by National Hemophilia Foundation’s Elizabeth Molnar to talk about the Unite For Bleeding Disorders walks!

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

100 Days Agenda: A Patient-First Blueprint: http://bit.ly/100DaysPatientsFirst

NHF’s Blue Sky Initiative: http://bit.ly/NHFBlue2020

Unite For Bleeding Disorders: http://bit.ly/UniteBD2020

Casting  for Season 2 of The Pain Podcast - http://bit.ly/PainPodCasting

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20








Oct 9, 2020

Patrick and Amy discuss social media’s impact on mental health before Mental Health Matters Too founder Debbie de la Riva joins to talk about mental health awareness, the questions she’s most commonly asked, the shifting role of telehealth, and the World Mental Health Day screening of the film Let’s Talk.

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

REGISTER for the Rare Impact Awards - bit.ly/NORDRIA20

RSVP for World Mental Health Day Let’s Talk Screening - bit.ly/LetsTalkMHEvent

 

CASTING for Season 2 of The Pain Podcast - http://bit.ly/PainPodCasting

 

Mental Health Resources*:

VISIT Mental Health Matters Too for resources and links - http://bit.ly/MHMT2020

GET INVOLVED with National Alliance on Mental Illness - https://bit.ly/3jHlQ9i

LEARN MORE about black mental health resources - https://bit.ly/3nzwtgq

GO TO Mental Health Coalition -  https://bit.ly/3iMEhIe

GET Cerebral - https://bit.ly/34CCPDk

HEAD to Better Help - https://bit.ly/34T4Vuj

 

* Believe Limited and Mental Health Matters Too are informing others of the existence of these services, but we are not endorsing any particular service..

 

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20



Oct 2, 2020

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.

 

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite

 

REGISTER (free) for the Rare Impact Awards - bit.ly/NORDRIA20

 

VOICES of MPN - bit.ly/VMPN20

 

VOTE!  Vote.org - bit.ly/VoteOrg20

VOTE!  WhenWeAllVote - bit.ly/BSPWWAV

SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP

LIKE BloodStream on Facebook - bit.ly/BSFB20

WATCH BloodStream on YouTube - http://bit.ly/BSPYT20




Sep 25, 2020

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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Sep 18, 2020

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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WATCH BloodStream on YouTube!



Sep 11, 2020

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!

 

SUBSCRIBE to BloodStream on Apple Podcasts!

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WATCH BloodStream on YouTube!



Sep 4, 2020

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

 

SUBSCRIBE to BloodStream on Apple Podcasts!

LIKE BloodStream on Facebook!

WATCH BloodStream on YouTube!



Aug 28, 2020

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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Aug 21, 2020

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 
Aug 20, 2020
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!
Aug 10, 2020

 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

SUBSCRIBE to BloodStream on Apple Podcasts!

LIKE BloodStream on Facebook!

WATCH BloodStream on YouTube!

 

Jul 31, 2020

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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Jul 20, 2020

Does von Willebrand factor have something to do with COVID? What’s NHF’s virtual BDC all about? And are Natalie and Patrick pregnant?! (Spoiler: YES!) All this plus we welcome Amy Board and interview Nikole Scappe!

Presenting Sponsor: Takeda

NHF’s Virtual Bleeding Disorders Conference: Interactive Program

COVID-19 & Von Willebrand Factor: Article

SOBO 4 Save One Life: William Addision’ Appalachian Trail Fundraiser! 

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Jun 15, 2020
The Flagship! Natalie and Patrick discuss the era of "virtual everything," how COVID's put remote chronic disease management in the spotlight, and Jason Schiffman (MD, MA, MBA), the Founder and Director of UCLA's Dual Diagnosis Program, joins for the interview to discuss the relationship between anxiety, depression, and addiction. Plus, Natalie and Patrick reflect on what's been a historic time of activism and civil unrest.
 
Presenting Sponsor: Takeda
Like Segment Sponsor: Genentech
 
 
 
 
 

 

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