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!
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FLOW, a BloodStream show for women - http://bit.ly/BSMFlow
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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
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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
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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
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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!
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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
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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
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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.
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LISTEN to BloodStream Journeys - https://bit.ly/BSJourneys
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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
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#hemophilia #ICER #healthinsurance #blackwomenforwellness #bleedingdisorders #bloodstreampod
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
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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.
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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