Ep. 33: February 18, 2019 - w/ Katy Wright-Mead

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2019 BloodStream Ep 33 - Banner - V2.png

This month on The BloodStream Podcast, we discuss “KonMari-ing” your social media timeline and the case for the controversial gene editing technology CRISPR. We hear from entrepreneur Jimi Olgahere on overcoming sickle cell disease with sickle cell disease, and actor Katy Wright-Mead joins BloodStream to discuss the Sundance Film Festival premiere of sometimes, i think about dying, her new film portraying a young woman struggling with her mental health. All that and more on Episode 33 of The BloodStream Podcast. 

Presenting Sponsor:

Takeda: https://www.bleedingdisorders.com

Like Segment:

https://www.healthline.com/health/mental-health/marie-kondo-instagram-social-media

 

Share Segment:

Overcoming Sickle Cell with Sickle Cell 

Jimi Olghere speaks during Powering Through @ NHF’s Bleeding Disorders Conference 2017

 

Comment Segment:

The Case For CRISPR Babies

 

Good News for Our Global Community:

Roche joins the WFH Humanitarian Aid Program

Save One Life Adds Shipments of Life-Saving Medicine To Programs

 

Goodbye News In 60 Seconds:

Dog Scams McDonald’s Customers Out Of Burgers By Pretending To Be A Stray

NBA trade news and rumors: As deadline nears, Anthony Davis to Lakers talks look dead

170 Foxes Are Rescued From Fur Farm and Given New Home at a Buddhist Monastery

 

Interview Segment: sometimes, i think about dying: Official Website

 

Mama Sue’s Netflix Recs:

The Making of the Mob: Chicago

9 Months That Made You

Downton Abbey

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Ep. 32: January 21, 2019 - w/ Amy Board

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This month on The BloodStream Podcast, Clive Smith and the UK Haemophilia Society provide an update on the inquiry into the UK’s Contaminated Blood Scandal, Amy Board joins to discuss her new role with Ask The Expert and Believe Limited, Natalie discusses a recent article on how to “invest” in your health, Patrick recaps a the HemAware story on New York Rangers Coach Dan Quinn, and we introduce a new segment: Mama Sue’s Netflix Recs. All that and more on Episode 32 of The BloodStream Podcast!

Presenting Sponsor:

Shire

Like Segment:

The Right Way to Invest in Your Health

 

Share Segment:

UK Infected Blood Inquiry Update by Clive Smith

 

Comment Segment:

New York Rangers Coach David Quinn on Hockey and Hemophilia

 

Interview Segment:

Amy Board, the new host of Ask The Expert! 

Community News In 60 Seconds:

Hepatitis C Virus Is Major Predictor of Liver Cancer in Hemophilia, U.S. Inpatient Data Reveals

BIVV001 Increases Half-life of Factor VIII in People with Severe Hemophilia A, Phase 1/2a Trial Shows

Novoeight Safe, Effective in Hemophilia A Patients Over Long Term, Phase 3b Trial Shows

Preventive Use of Idelvion Lets Kids with Hemophilia B Need Fewer Infusions, Trial Shows

Catalyst Announces Updates on Two Lead Compounds for Hemophilia

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Stop The Bleeding!: stbhemo.com

Teen Impact Awards: teenimpactawards.com

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Ep. 31: December 17, 2018 - Year in Review

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This month on The BloodStream Podcast, Natalie brings you a 2018 year in review, highlighting some of BloodStream’s greatest moments from the past year.  All that- plus Believe Limited’s creative director Ryan Gielen hosts an interview with several teens who participated in the Breaking Through! Musical Theater Intensive in New York City- and more, on episode 31 of the BloodStream Podcast!

Presenting Sponsor:

Shire

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Stop The Bleeding!: stbhemo.com

Teen Impact Awards: teenimpactawards.com

Bombardier Blood: BombardierBlood.com

BloodFeed: https://www.bloodfeed.com


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Ep. 30: November 19, 2018 - NEHA FallFest 2018

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BloodStream Podcast - Ep 30 - Banner - V2.png

This month on The BloodStream Podcast, Patrick brings you to New England Hemophilia Association’s (NEHA) FallFest to learn about “Current and Emerging Therapies in Hemophilia Care,” and to highlight presentations on the Teen Impact Awards, Stop The Bleeding!, and Bombardier Blood during NEHA’s FallFest. All that- plus a new Share segment from NHF’s Nikole Scappe- and more, on episode 30 of the BloodStream Podcast!

Presenting Sponsor:

Shire

 

Share Segment:

Leave Your Fingerprint by Nikole Scappe

 

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Stop The Bleeding!: stbhemo.com

Bombardier Blood: BombardierBlood.com

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Ep. 29: October 22, 2018 - at NHF's 70th Annual Bleeding Disorders Conference

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This month on The BloodStream Podcast, Natalie records from the National Hemophilia Foundation’s 70th Annual Bleeding Disorders Conference, bringing highlights, small interviews and generally providing the flavor of this year’s annual meeting. In addition to conference coverage, this month we also hear from community member Ben Martin in our Share segment. All that and more on Episode 29 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Latest Ask The Expert Podcast: Ep. 19: The Model Volunteer - w/ Maryann May - September 24, 2018

Latest Powering Through Podcast: Ep. 21 - NorCal w/ Lauren Barbounis & Jeremy Dodson

CHECK IT OUT!

TeenImpactAwards.com

BombardierBlood.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

Share Segment: Welcome to the Club by Ben Martin

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Ep. 28: September 17, 2018 - w/ Val Bias and Dawn Rotellini

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BloodStream Episode 28 - Val Bias and Dawn Rotellini - Banner.png

This month on The BloodStream Podcast, the National Hemophilia Foundation’s (NHF) CEO Val Bias and SVP Dawn Rotellini preview NHF’s 70th Annual Bleeding Disorders Conference taking place October 11th-13th in Orlando, Florida.  UK Haemophilia Society trustee Clive Smith shares his Ironman story, Natalie leads a discussion on wearables and health outcomes, and Patrick walks through the recent The Atlantic article on hemophilia and gene therapy titled: The Patients Who Don’t Want To Be Cured. All that and more on Episode 28 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Believe @ #NHF2018: BelieveLTD.com/NHF2018

Latest Ask The Expert Podcast: Ep. 18: Career Counselor Episode - w/ Don Molter - August 27, 2018

Latest Powering Through Podcast: Ep. 20 - NEHA w/ Dr. Jonathan Bernstein, Dr. Stacy Croteau, Emily Bisson, & Caitlin Montcrieff

CHECK IT OUT!

TeenImpactAwards.com

BombardierBlood.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

Community News In 60 Seconds:

11-YEAR-OLD WITH RARE BLEEDING DISORDER BAKES ONE-OF-A-KIND CAKES FOR OTHER SICK KIDS

Hemophilia Center of Western New York awards $890,000 grant to UB to address shortage of specialists in non-malignant blood disorder

uniQure (QURE) Reports First Patient Treated in Dose-Confirmation Study of AMT-061 in Patients with Hemophilia B

IDELVION® 3500 IU Vials Now Available to Provide Convenience to Patients

Catalyst Biosciences Announces Publication of Marzeptacog Alfa (Activated) Phase 1 Data in The Journal of Thrombosis and Haemostasis

Promising Data Supports Development of AAVhu37-based Gene Therapy for Hemophilia A

Like Segment: Fitness trackers turn health into a game that users rarely win ‘Beyond the Wrist: Rethinking Wearable Technology for Mental Health

Share Segment: Clive Smith - Iron Out The Obstacles

Comment Segment: The Patients Who Don’t Want To Be Cured

Interview Segment: NHF CEO Val Bias and SVP Dawn Rotellini Preview NHF BDC 2018

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

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BloodStream Podcast - Ep 27 - Wheels for the World - Banner.png

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

TeenImpactAwards.com

BreakingThroughHemophilia.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

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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Ep. 26: July 16, 2018 - w/ Rebecca Haber

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BloodStream - Ep 26 - Rebecca Haber - Banner.png

This month on The BloodStream Podcast, community member Lidia Ruiz shares her “An Unexpected Blessing” story, Natalie presents an article on the Step Therapy bill headed to Rhode Island’s state house, we highlight ASH, ISTH, NHF, and WFH’s collaboration in developing clinical practice guidelines for VWD and expectant mom, Rebecca Haber, shares with us how her pregnancy led to discovering that she has Hemophilia C (Factor XI deficiency) in this month’s Interview Segment. All that and more on Episode 26 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Latest Ask The Expert Podcast: Ep. 16: Nutrition - w/ Tracy Mann - June 25, 2018

Latest Powering Through Podcast: Ep. 18 - Florida w/ Lilliam Bervis, Bobby Monohan, & Allie Cashel

TeenImpactAwards.com

BreakingThroughHemophilia.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

Community News In 60 Seconds:

  1. Does CRISPR cause cancer?

  2. Developing Inhibitors Inflates Treatment Costs and Impairs Quality of Life, Study Finds

  3. New Canadian study to improve eradication of inhibitors in Hemophilia A patients)

  4. uniQure Enrolls First Patient in Phase III HOPE-B Pivotal Study of AMT-061 in Patients with Hemophilia B)

  5. NHS England greenlights hemophilia drug

  6. CHMP recommends EU marketing authorization for Veyvondi® [vonicog alfa, recombinant von Willebrand factor] for adults with von willebrand disease]

  7. Hemophilia Drug Development Summit Takes Aim at Hurdles Facing New and Upcoming Treatments

  8. Oxidation of FVIII Increases Immune Response in Hemophilia A Mouse Model, Study Finds)

Like Segment: 'Step Therapy' Bill Headed to RI State House // Stand Against Step Therapy: http://www.steptherapy.com/

Share Segment: Lidia Ruiz - An Unexpected Blessing

Comment Segment:

NHF, WFH, ISTH, and ASH to collaborate on clinical practice guidelines for von willebrand disease.

Help Inform Guidelines for VWD Diagnosis and Care

BetterYouKnow.org

Interview Segment: Rebecca Haber

 

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Ep. 25: June 18, 2018 - w/ Lisa Thibeault

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_BloodStream Episode 25 - Lisa Thibeault - Banner.png

This month on BloodStream, we review major takeaways from World Federation of Hemophilia’s 2018 World Congress, Dakota Rosenfelt shares his journey of life with hemophilia, and we speak with Lisa Thibeault, the nurse coordinator from the Southeastern Ontario Regional Inherited Bleeding Disorders Program in Ontario, Canada, about the progress made in the treatment of women with bleeding disorders. All that and more on Episode 25 of The BloodStream Podcast!

Exclusive Sponsor: Shire

World Federation of Hemophilia 2018 World Congress

World Congress Daily Recaps

FDA Clears way for gene therapy

BioMarin presents data on BMN 270

Bayer presents insights on HemACTIVE study

Novo Nordisk presents data on Rebinyn and presents study data on NovoEight

CSL Behring Supports patient advocacy groups through LEAD Program

Octapharma presents data on SubQ-8 and presents data on Nuwiq

UniQure presents data their AAV5 gene therapy program

Bioverativ (a Sanofi company) presents preliminary data for BIVV001

Shire presents data on rVWF in the treatment of people with VWD

National Hemophilia Foundation’s Dawn Rotellini elected to WFH’s Board of Directors.

Genentech/Roche received Priority Review from the FDA for Hemlibra in Hem A patients without inhibitors.

coreHEM publishes Core Outcome Set for Hemophilia Clinical Trials

Spark and Pfizer present data on SPK-9001 and the modified process

New study looks at Von Willebrand Disease, Von Willebrand Factor, and Aging

 

Latest Ask The Expert Podcast: Episode 15 featuring Shari Luckey

Latest Powering Through Podcast: Episode 17 featuring Vanessa Flora, Jason Flora, and Heather Stephenson

Share Segment: Dakota Rosenfelt:  A Prescription for Success

Interview Segment: Lisa Thibeault, RN:  Let’s Talk Period, from Queen’s University + partners

 

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Ep. 24: May 21, 2018 - w/ Jonathan James

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BloodStream Episode 24 - Jonathan James - Episode Banner.png

This month on The BloodStream Podcast, Nabila Husseni from Gujarat, India shares her story of living with Factor V deficiency and championing women’s equality, Natalie presents a recent NBC story on the rise of depression, we discuss Takeda’s acquisition of Shire, and Hope For Hemophilia founder Jonathan James joins us for the Interview Segment. All that and more on Episode 24 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Latest Ask The Expert Podcast: Episode 14 - Physical Therapy

Latest Powering Through Podcast: Episode 16 - HANY's Family Education Conference

Like Segment: Major depression on the rise among everyone, new data shows

// Depression Symptoms  

Share Segment: Nabila Husseni- Strength

Comment Segment: Japan's Takeda clinches $62 billion Shire Deal

Interview Segment: Hope for Hemophilia  

Community News in 60 Seconds:

Hemlibra Named a Breakthrough Therapy for Hemophilia A Without Inhibitors

On World Hemophilia Day, Bioverativ Shares Success Stories from the Developing World

CRISPR “One Shot" Cell Therapy for Hemophilia Developed

Gene-Editing Study in Monkeys Sets Stage for Further HIV Cure Research

Gene Therapy Injected Into Dog Muscle Fares Well in Hemophilia B Study

Hemophilia therapy could be first drug with $1M price tag: 3 things to know

Seattle Plans to Build an AIDS Memorial Called The AMP

 

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Ep. 23: April 16, 2018 - w/ Bill Patsakos

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BloodStream Episode 23 - Bill Patsakos - Banner.png

This month on The BloodStream Podcast, Dr. Steven Pipe joins us to discuss Hemlibra, the recently reported patient deaths, and what this means for our community. FDNY Lieutenant, CVS pharmacist, and FEMA volunteer Bill Patsakos joins us to discuss accounting for the bleeding disorders community during disaster relief, and advocate Maryann May shares her #ibleedtoo story. All that and more on Episode 23 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Like Segment: What Is Floating?  Sensory Deprivation Benefits // Floatation Locations

Share Segment: Maryann May - #ibleedtoo

Comment Segment: National Hemophilia Foundation: Statement From Genentech Regarding Hemlibra

Interview Segment: Eyewitness To Destruction from LA Kelley Communications

Community News in 60 Seconds:

The Ambrosio family of the New York City Hemophilia Chapter celebrated their 10th annual benefit fundraiser

CSL Plasma Introduced Miguel Angel Jiminez to children with hemophilia during a PGA Champions Tour event

Scientists in Australia have identified a gene-control mechanism that enables some individuals to produce a fetal form of hemoglobin, offsetting the severity of certain blood diseases

Precision Develops Better Way of Detecting Levels of Clotting Factor Inhibitors

BioMarin Wins Award for Getting Gene Therapy Facility Operational Ahead of Time

Many Hemophilia B Patients Have Pain, Depression and Overall Poor Health, Study Finds

New Method May Improve Delivery of Targeted Gene Therapies   

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