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
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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
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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..
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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
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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
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 StatementThe 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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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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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
Like Segment: Maintaining Chronic Disease Management During COVID
Patrick speaks with Connie R. Faltynek, biochemist and author of Pain: Why Do We Continue to Suffer? about why treatment for pain is so far behind, the various forces contributing to pain, and more!
Pain: Why Do We Continue to Suffer?
BleedingDisorders.com (thanks, Takeda!)
BloodStream Media hosts Ahmar Zaidi and Patrick James Lynch are joined by guests Phillip Okwo and André Marcel Harris for a discussion on race, violence, and healthcare in America.Take Action Right Now: https://8cantwait.org/Guests: Phillip Okwo; André Marcel HarrisSubscribe to The BloodStream Podcast
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Patrick is joined by Ask The Expert host Amy Board and Mental Health Matters Too Founder, Debbie de la Riva for a conversation on chronic pain and mental health.
Watch LIVE on Facebook.
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Thank you to our Presenting Sponsor, Takeda. Visit bleedingdisorders.com to learn about how Takeda is responding to COVID19.
Patrick is joined by musical artist Trevor Martin for a special interview and performance on the day his new single 'Go-To' debuts!
Watch LIVE on Facebook
Listen to 'Go To' from Trevor Martin
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Thank you to our Presenting Sponsor, Takeda.
Visit bleedingdisorders.com to learn how Takeda's responding to COVID19.
Patrick & Natalie discuss COVID’s backlogging elective surgeries, Debbie & Amy unpack stress and coping, and DJ Pete Isaacs joins for an interview on chronic pain. Happy Mental Health Awareness Month!
Like Segment Sponsor: Genentech
Natalie’s Like Segment Links
How The Brain Can Change Your Experience of Pain
Visit Mental Health Matters Too for more resources.
Listen to The Pain Podcast from BloodStream Media
Presented by Tremeau Pharmaceuticals.
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Patrick catches up with New England Hemophilia Association Executive Director, Rich Pezzillo.
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Thank you to our Presenting Sponsor, Takeda. Visit bleedingdisorders.com to learn how Takeda’s responding to COVID19.
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Natalie and Patrick discuss COVID’s unique impact on men versus women, catch up with James Hunt from the UK Haemophilia Society and clinical trial participant Luke Pembroke, share takeaways from WFH’s recent COVID webinar as well as highlights from the World Hemophilia Day (4/17) LIVE that streamed from BloodStream Media’s Facebook Page.
Presenting Sponsor: Takeda
Segment Sponsor: Genentech
#WHD2020 Facebook Live Video
Like Segment: Why COVID19 is different for men and women
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Natalie and Patrick catchup over Zoom with their mothers, who are working with COVID patients inside Ohio and New York City hospitals, respectively.
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Safety, Vigilance and New Frontiers (Episode 3, The Factor Revolution, originally published 10/2017) pulls together more interviews with advocacy and industry leaders, like Michelle Rice (Senior VP of External Affairs, National Hemophilia Foundation), Andy Slavitt (Former Obama Administration Medicare, Medicaid and ACA Overseer), and Dr. Steven Pipe (Director, Coagulation Laboratory, University of Michigan), who give incredible insight on the future of bleeding disorders treatments and access to care. This series - and especially this episode - was created in partnership with The HIV Story Project and the seminal documentary film, Bad Blood.BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project."
Presenting Sponsor: Takeda
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