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

Click the play button below to stream the episode via SoundCloud!

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   

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 22: March 19, 2018 - w/ Molly Reeser

Click the play button below to stream the episode via SoundCloud!

BloodStream Episode 22 - Molly Reeser - Episode Banner.png

This month on The BloodStream Podcast, community member Kevin Krivosik shares his journey toward independence, Camp Casey Founder Molly Reeser joins us to share the camp’s mission and her inspiration for starting it, and we take a look a recent Forbes Magazine piece highlighting one of the many challenges in mental health treatment. And using a combination of written statements, audio recordings, and his own original writing, we say goodbye to community leader Barry Haarde. All that and more on Episode 22 on The BloodStream Podcast!

Exclusive Sponsor: Shire

Hemophilia and Young Adulthood, a new podcast series: BloodLinePod.com

Bleeding Disorders Awareness Month: RedTieCampagin.org

Like Segment: Psychiatrist Shortage Escalates As U.S. Mental Health Needs Grow

Share Segment: Kevin Krivosik - “Third Time’s a Charm” 

Comment Segment/Remembering Barry Haarde: Remembering the Rain: Barry Haarde

Interview Segment: Camp Casey Founder Molly Reeser

Community News in 60 Seconds:

Patient Advocacy Groups Worldwide Plan Events Marking Rare Disease Day (Feb 28)

The National Heart, Lung, and Blood Institute to host workshop on Factor VIII Inhibitors May 15-16 in Bethesda, Md.

The UK’s First Genome-Editing Study Is Underway with Phase ½ on SB-FIX

Hemlibra receives approval in Europe

Adynovate receive approval in South Korea

Eloctate show “promise” for use in immune tolerance induction (ITI) therapy.

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 21: February 19, 2018 - w/ Michael Hargett

Click the play button below to stream the episode via SoundCloud!

BloodStream Ep 21 - FB Banner - V2.png

This month on The BloodStream Podcast, we discuss how one executive director in China has creatively given hope, dignity and income to her patients, we take you through how to stay fit and healthy while traveling, and we introduce a brand new game here on the BSpod. Plus, Hannah Lutz shares her story of life with Type 3 Von Willebrand Disease and Michael Hargett- the hemophiliac who lost 280 pounds and became the first person with hemophilia to undergo a heart transplant- joins us as today’s interview guest to discuss his remarkable journey. All that and more on Episode 21 of The BloodStream Podcast!

 

Exclusive Sponsor: Shire

Remembering Barry Haarde: Powering Through HFA 2016

Like Segment: How to Fit in Exercise While You Travel

 

Share Segment: Hannah Lutz - Type Three Girl

 

Comment Segment: How Paper and Scissors Gave Back Dignity to Hemophilia Patients

 

Interview Segment: Michael Hargett’s NewHeart4Mike.com website

 

Community News in 60 Seconds:

 

Parting Shots:

#EAHAD2018 on Twitter

 

Other Links of Interest

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 20: January 15, 2018 - w/ Susan Lynch

Click the play button below to stream the episode via SoundCloud!

This month on The BloodStream Podcast, Shire and Roche are locked up in a legal dispute related to Hemlibra, what does this mean and will it impact patients’ ability to receive Hemlibra? We discuss in today’s Comment Segment. A New York Times article examines why the United States spends so much more money on healthcare than any other country in a story presented by Natalie in our Like Segment, and entrepreneur and hemo dad Mark Kenny shares his compelling story and perspective during our Share Segment. Plus Natalie and I sit down with hemo mom (and Patrick’s mom!) Susan Lynch to get her perspective of being introduced to hemophilia in the mid-1980’s and how she navigated being a single parent of two kids with hemophilia during the advent of recombinant products and prophylaxis. All that and more on this Episode 20 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Like Segment:  Why the US spends so much more money on other nation’s than Healthcare.

Share Segment: Mark Kenny: Entrepreneur and Hemo Dad

Comment Segment: Shire and Roche locked in legal dispute over Hemlibra.

Links:

From Biopharma Dive, “Shire looks to stall Hemlibra impact with court injunction”

From Reuters, “Roche, Shire court fight escalates over haemophilia drug”

From Shire, “Shire Files Preliminary Injunction Against Roche to Protect Its Intellectual Property”

 

Parting Shots:

Syria allows some patients to leave besieged area

Von Willebrand Disease in Dogs: Symptoms, Causes, & Treatments

Woman awarded £9m damages for care of son who 'should not have been born'

 

Other Links of Interest

World Federation of Hemophilia’s Government Support in Armenia

Chris Bombardier’s Adventures of a Hemophiliac Facebook Page

Powering Through Podcast

Ask The Expert Podcast

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 19: December 18, 2017 - w/ Val Bias

Click the play button below to stream the episode via SoundCloud!

BloodStream Episode 19 - Val Bias - Website Banner.png

This month on The BloodStream Podcast, Hemlibra is FDA approved and the first non-factor replacement therapy to treat people with hemophilia A (and inhibitors) is now on the market, we’ll discuss that along with other major product development takeaways from the American Society of Hematology’s Annual Meeting held earlier this month during our Comment Segment. Natalie will present a story on how new HIV guidelines are revolutionizing patients lives in the Like Segment, and Community Member Angel Parrett shares her story of living with Factor 1 deficiency in today’s Share Segment. Plus, Patrick sits down with National Hemophilia Foundation CEO Val Bias to review some of the major community highlights from 2017, and to look ahead at what’s to come in 2018. All that and more on Episode 19 of The BloodStream Podcast.

Exclusive Sponsor: Shire

Like Segment: ‘I don’t feel like I’m a threat anymore.’ New HIV guidelines are changing lives.

Share Segment: Angel Parrett: One In A Million: Factor 1 Deficiency

Comment Segment: Hemlibra is FDA Approved & Major Takeaways from #ASH17

Hemlibra is FDA approved for adult and pediatric patients with severe hemophilia A and inhibitors.

AAV5-Factor VIII Gene Transfer in Severe Hemophilia A

Why Spark Therapeutics Stock Dropped Following #ASH17

Gene Therapy Nearly Eliminates Hemophilia B Bleeding Episodes, Trial Shows

Shire, Rani Therapeutics Collaborate on Pill to Treat Hemophilia A.

Guy Young, MD, on Recent Revolutions in Hemophilia Treatment

 

Other Links of Interest

Patrick discussing hemophilia and Gene Therapy on BBC’s Open Source (Interview starts at 46:50)

Powering Through Podcast

Ask The Expert Podcast

TreatmentForAll.org

Stop The Bleeding! - "Mental Health, or HoCheeCo"

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 18: November 20, 2017 - w/ Alex Borstein

Click the play button below to stream the episode via SoundCloud!

BloodStream Podcast - Episode 18 - Episode Banner.png

This month on The BloodStream Podcast, we interview actress Alex Borstein who’s best known as the voice of Lois on “Family Guy.” Alex talks about her life as an entertainer, a symptomatic carrier and a hemo mom.  In our Like Segment, Natalie introduces us to the Feldenkrais Method and how it’s being used to manage chronic pain. In our Share Segment, New York City Hemophilia Chapter member Nicole Angeles shares her story of living with von Willebrand Disease, and some of the very challenging decisions it’s forced her to make. Patrick highlights Jonathan Cohn’s excellent HuffPost piece about the ousted Iowa teen with hemophilia whose insurance expense Wellmark Blue Cross Blue Shield explicitly cited to justify pulling out of the Iowa health care markets. What does this story tell us about the future of the Affordable Care Act? Find out now on Episode 18 of The BloodStream Podcast.

Exclusive Sponsor: Shire

Like Segment: The Feldenkrais Method and Chronic Pain

Share Segment: Nicole Angeles’VWD & Me.”

Comment Segment: An Iowa Teenager Didn’t Wreck His State’s Health Care Market. Here’s Who Did.

Alex Borstein Interview

http://variety.com/2017/tv/news/the-marvelous-mrs-maisel-amazon-amy-sherman-palladino-albert-cheng-1202614481/

Other Links of Interest

FDA’s announcement about "Hemlibra"

Powering Through Podcast

Ask The Expert Podcast

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 17: October 16, 2017 - w/ Dan Levy

Click the play button below to stream the episode via SoundCloud!

Screen Shot 2017-10-17 at 7.33.30 PM.png

This month on The BloodStream Podcast, we spotlight “Factor Revolution,” BloodStream Media’s new three-part series covering the history of treatment in hemophilia; Natalie takes us through the five things all new moms need in our Like Segment; “Factor Revolution” Producers Ryan Gielen and Seth Kirschner introduce themselves and provide a window into their work in our Share Segment; Patrick highlights recent news related to medical marijuana/cannabis use for pain management; and finally sportswriter and hemo dad Dan Levy - perhaps better known as the dad of #IronMax - shares his perspective on media, awareness, and more! Listen now on Episode 17 of The BloodStream Podcast.

Exclusive Sponsor: Shire

Like Share Comment

Like: Five things all new mothers need.

Share: “Factor Revolution” Producers Ryan Gielen and Seth Kirschner share their experience of building relationships with the bleeding disorders community.

Comment: Medical cannabis can help reduce our nation's pain epidemic || The Hill

Why (some of) the GOP is Pushing for Medical Marijuana Research || Rolling Stonen

Justice Department at Odds with DEA Over Marijuana Research. || Washington Post

Sen. Hatch Introduces Medical Marijuana Research Bill || Orrin Hatch Campaign Website

Dan Levy Interview

Marvel Honors Boy Fighting Hemophilia With Cameo in ‘Iron Man’ Comic | NBC Nightly News

Inspiring America: Checking In On Real Life Super Hero Kid ‘Iron Max’

Hearts 4 Hemophilia

 

Powering Through Podcast

Ask The Expert Podcast

BloodFeed: https://www.bloodfeed.com

Powering Through Podcast: http://poweringthrough.org/podcast

Ask The Expert Podcast: http://bloodstreamexpert.com

 

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 16: September 18, 2017 - w/ Andy Slavitt

Click the play button below to stream the episode via SoundCloud!

Andy Slavitt, the former head of Medicare, Medicaid, and the Affordable Care Act (ACA) under President Obama, joins us for a very special interview segment on the importance of the ACA for people with hemophilia. UK-based community advocate Laurence Woollard provides insight into the UK bleeding disorders community and his personal journey in hemophilia advocacy. Natalie leads a New York Times story on the debate surrounding how to price gene therapy treatments, and Patrick provides an overview of the recent, terrible news of a patient death during the Fitusrian clinical trial - what happened, what it means, and what happens next? Listen now on Episode 16 of The BloodStream Podcast.

Exclusive Sponsor for Episode 16: Shire

Like Share Comment

Like: NYT: New Gene-Therapy Treatments Will Carry Whopping Price Tags

Share: Laurence Woollard’s “The Endeavour to Progress” 

Comment: Alnylam Suspends All Trials of Fitusiran After Hemophilia A Patient Dies in Phase 2 Study // Story from RareDr.com // Story from FierceBiotech

Andy Slavitt Interview

JAMA Forum: Reforming Medicaid

USA Today Column: Spare America a do-over on health care. Seize the bipartisan moment.

Other Links of Interest

Clinical Trials 101 from HemAware

Clinical Trials from the Hemophilia Federation of America

Powering Through Podcast

Ask The Expert Podcast

Making-Of Bombardier Blood Video

Stop The Bleeding! Season 7 - Behind The Story Videos

Hope For Hemophilia

BloodFeed: https://www.bloodfeed.com

Powering Through Podcast: http://poweringthrough.org/podcast

Ask The Expert Podcast: http://bloodstreamexpert.com

 

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 15: August 21, 2017 - w/ Special Guests from NHF

Click the play button below to stream the episode via SoundCloud!

BloodStream Ep. 15 - Website Banner.png

We preview National Hemophilia Foundation’s (NHF) 2017 Annual Meeting! Interviews include NHF CEO Val Bias, NHF staff and volunteers. During our Like, Share, Comment segment, Natalie and I discuss a recent article profiling companies with notably strong employee health benefits, a World Federation of Hemophilia (WFH) article highlighting recent success in their Twinning Program, and community member Tai-yan Chou-Kudu  presents Hemophilia - Not Just Physical, a spoken-word piece on severe hemophilia A’s impact on her life and studies. All of that, plus a look at a new inquiry in the UK into the blood contamination crisis. Listen now on Episode 15 of The BloodStream Podcast!

Exclusive Sponsor for Episode 15: Shire

Like Share Comment

Like: Nine Companies Hiring Now That Cover 100% of Employee Health Insurance Premiums

Share: Tai-yan Chou-Kudu’s “Hemophilia - Not Just Physical

Comment: Twinning successes in 2016, Inquiry to contaminated blood scandal in UK

Other Links of Interest

Powering Through Podcast Ep 7 feat. four HTC hematologists: http://bit.ly/PTpodEp7

Ask The Expert Podcast:  http://BloodStreamExpert.com

The Haemophilia Society’s Blog: http://haemophilia.org.uk/blog/

Outreach and Identification in Indonesia video from the World Federation of Hemophilia’s Humanitarian Aid Program: http://bit.ly/WFHIndonesia

Believe @ #NHF2017 Video: VIDEO NOT YET AVAILABLE.

Believe @ #NHF2017 Printed Schedule: http://BelieveLTD.com/NHF2017

https://www.hepmag.com/article/coffee-cannabis-may-protect-liver-hiv-hcv

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay


 

Ep. 14: July 17, 2017 - w/ Special Guest Dr. Steven Pipe

Click the play button below to stream the episode via SoundCloud!

On this episode, Dr. Steven Pipe- pediatric hematologist and Chair of the National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council- provides an update on new and developing treatment products immediately following his attending the International Society on Thrombosis and Hemostasis (ISTH) Congress. Natalie leads a discussion on a recent CDC study that indicates opioid prescriptions are on the decline, Patrick initiates a game based on a new bleeding disorders online platform, and a community member shares her take on platelet disorders. All this and more on Episode 14 of The BloodStream Podcast! Click “Episodes” above to stream or download

Exclusive Sponsor for Episode 14: Shire

Opioid Prescriptions Fall After 2010 Peak, C.D.C. Report Finds:  Link To Article

Rare Platlet Disorders: Link To Article

ISTH Congress 2017 Headlines:

BioMarin and Spark: Link To Article

Idelvion: Link To Article

Emicizumab: Link To Article

Nuwiq: Link To Article

Q&A with R&D chief of Bioverativ: Link To Article

Steven Pipe presents small molecule therapies: Link To Article

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

 

Ep. 13: June 19, 2017 - w/ Special Guest Rob Bradford

Click the play button below to stream the episode via SoundCloud!

In this episode, Patrick & Natalie discuss a recent study highlighting the issue of patient aging, a story about a young Iowan with hemophilia whose healthcare costs recently made national waves, and the latest on the American Health Care Act. Plus, our hosts sit down for an in-person interview of Believe Limited’s own Rob Bradford, recently back from spending 47 days at Mount Everest base camp filming and managing footage for Bombardier Blood, the documentary on Chris Bombardier’s historic summiting of the world's tallest mountain! All this and more on Episode 13 of BloodStream! Click "Episodes" above to stream or download.

Exclusive Sponsor for Episode 13: Shire

Like Share Comment:

Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link To Article.

Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link To Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).

Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link To Article from NHF: How to Advocate to Protect Access to Health Insurance. Link To NHF’s Share Your Story Campaign

  

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

 

Ep. 12: May 15, 2017 - Year In Review

Click the play button below to stream the episode via SoundCloud!

In this episode, Patrick and the BloodStream team celebrate the first year of the BloodStream podcast! Patrick leads us through this "Year In Review" episode by bringing us your favorite sequences from the past year of episodes. Listen to fan-favorite and milestone moments of the first year and remind yourself of all the things you learned. All this and more on Episode 12 of BloodStream! Click "Episodes" above to stream or download.

Supporting Sponsor for Episode 12: Shire

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 11: April 17, 2017 - World Hemophilia Day Special Episode

Click the play button below to stream the episode via SoundCloud!

BloodStream Ep 11 - FB Boostable - V4.png

In this episode, Patrick and Natalie celebrate World Hemophilia Day with two special segments: an interview recap with Patrick of Believe Limited's recent trip to Nepal for production on Bombardier Blood and a mashup of soundbites and interview clips from Believe's production on the World Federation of Hemophilia's Treatment for All web series. All that, plus a few special announcements and a brief recap of Hemophilia Federation of America's Annual Symposium on Episode 11 of The BloodStream Podcast!

Sponsor for Episode 11: Shire

Learn more about World Hemophilia Day from the World Federation of Hemophilia (WFH): Link To Article

Check out Stop The Bleeding!’s Season 7 launch w/ their a World Hemophilia Day special episode: Link To Article

Listen to BloodStream Media’s new Von Willebrand Disease podcast series from BloodLine: Link To Article

Check out Hemophilia Federation of America’s website for more on the 2017 and 2018 Symposiums: Link To Article

Special Segments

Learn more about Chris Bombardier’s historic climb of Mount Everest as well as Bombardier Blood, the documentary film being produced about it: Link To Article

Watch all 10 episodes of WFH’s Treatment for All web series and learn more about their Humanitarian Aid Program: Link To Article
 

Contact BloodStream Media:

Got an idea for a future segment, or a question for Ask The Expert? Email us: mailbag@bloodstreammedia.com.

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 10: March 20, 2017 - W/ Special Guest Justin Levesque

Click the play button below to stream the episode via SoundCloud!

In this episode- it's Bleeding Disorders Awareness Month! Patrick and Natalie discuss that, Washington Days, the landmark opening of the My Life, Our Future research repository, and more! Also, Australian community member Jenna Lovell gives her take on life w/ vWD, and Mainer Justin Levesque discusses photography, hemophilia, Iceland, and much more during a wide-ranging Sit-Down conversation with Patrick. All this and more on Episode 10 of The BloodStream Podcast!

Sponsors for Episode 10:

Presenting Sponsor: Stop The Bleeding! (STB!)

Supporting Sponsor: Shire

Trending Topics:

EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A: Link To Article

FDA Gives Breakthrough Designation to Hemophilia Gene Therapy: Link To Article

Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients: Link To Article

LA Kelley Launches a New Edition of Raising a Child With Hemophilia: Link To Article Learn more about all of LA Kelley’s offerings: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

HFA 2017 Policy & Government Relations Internship: Link To Article

New and Improved Blood Brotherhood Forum from HFA: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

 

Like Share Comment:

Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link To Article.

Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link To Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).

Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link To Article from NHF: How to Advocate to Protect Access to Health Insurance. Link To NHF’s Share Your Story Campaign

 

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

 

Ep. 9: February 20th, 2017 - w/ Jorge de la Riva

Click the play button below to stream the episode via SoundCloud!

In this episode, Patrick and Natalie review some advocacy best practices, take a look at the increasingly popular cryotherapy, share one mom's (anonymous) story of addiction, hemophilia and family, and during the Sit-Down segment, Patrick speaks with NHF board member Jorge de la Riva about how NHF's board works, his views on health and social advocacy, and his family's personal story of being introduced to hemophilia. All this and more on Episode 9 of BloodStream! Click "Episodes" above to stream or download.

 

Sponsors for Episode 9:

Presenting Sponsor: Stop The Bleeding! (STB!)

Supporting Sponsor: Shire

Trending Topics:

EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A: Link To Article

FDA Gives Breakthrough Designation to Hemophilia Gene Therapy: Link To Article

Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients: Link To Article

LA Kelley Launches a New Edition of Raising a Child With Hemophilia: Link To Article Learn more about all of LA Kelley’s offerings: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

HFA 2017 Policy & Government Relations Internship: Link To Article

New and Improved Blood Brotherhood Forum from HFA: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

Like Share Comment:

Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link To Article.

Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link To Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).

Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link To Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign

Sit-Down Segment with NHF Board Member Jorge de la Riva

Jorge on Twitter Link

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Announcing Two New Podcasts From BloodStream Media!

Click the play button below to stream the episode via SoundCloud!

Special Annoncement Episode!

Believe Limited is excited to announce the launch of not one but TWO new podcasts! Ask the Expert and The Powering Through Podcast join our flagship podcast BloodStream™ to round out the growing BloodStream Media Network. Read a bit more about both podcasts below and make sure to subscribe on your favorite platform! Check out BloodStreamMedia.com!

Ask The Expert features a HTC hematologist or other healthcare expert answering listener-submitted questions about all things bleeding disorders. Ask The Expert is created and produced by Believe Limited and hosted by Patrick James Lynch. Listen and Subscribe!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your health care provider before making any decisions about treatment. 

The Powering Through Podcast features empowering, live panel conversations on obstacles, challenges, and what it takes to overcome, held for the benefit of the bleeding disorders community. The Powering Through Podcast is sponsored by NCHS, produced by Believe Limited, and hosted by Patrick James Lynch. Listen and Subscribe!

BloodStream Host Patrick James Lynch on Twitter and Instagram

Want to submit a question for Ask The Expert? Want to send in an idea for a segment on The BloodStream Podcast? Want to find out more about Powering Through events in your area? Email BloodStream: mailbag@bloodstreammeda.com.

Ep. 8: January 16th, 2017 w/ NFL Super Bowl Champion Josh Gordy

Click the play button below to stream the episode via SoundCloud!

In this episode, Patrick & Natalie review recent headlines of interest, introduce a patient perspective on life with sickle cell disease, discuss Believe Limited's upcoming documentary about hemophiliac mountaineer Chris Bombardier's summiting of Mount Everest, and discuss football, finance, and five tips toward improving money management during the Sit-Down segment with special guest Josh Gordy, NFL Super Bowl champion turned financial coach. All this and more on Episode 8 of BloodStream!

Sponsors for Episode 8:

Presenting Sponsor: Stop The Bleeding! (STB!)

Supporting Sponsor: Shire

Trending Topics:

Registration is now open for:

National Hemophilia Foundation (NHF) hosted Washington Days (March 8th-10th): Link To Article

Hemophilia Federation of America’s (HFA) 2017 Symposium (April 6th-9th): Link To Article

NHF’s 2017 Annual Meeting (August 24th-26th): Link To Article

The FDA announces a Class 1 recall from Nurse Assist Inc of Normal Saline Flush syringes: Link To Article

Steps-For-Living outlines Exercise and Activity Options for people with bleeding disorders: Link To Article

NBC Nightly News catches up with “Iron Max.”: Link To Article

NHF survey seeking men with hemophilia age 50 or older: Link To Article

Like Share Comment:    

Like: Meditation may help alleviate chronic pain, study shows: Link To Article Meditation App: Headspace: Link To App

Share: Mt. Everest climb by severe hemophiliac Chris Bombardier is the subject of new Believe LTD documentary: Link To Article

Comment: Delisa O’Brien’s tumblr on diet, health, and sickle cell disease. Link To Article

 

Sit-Down Segment with NFL Super Bowl Champion Josh Gordy

Josh Gordy’s Freedom Financial Coaching Website: Link To Article

Freedom Financial Coaching Facebook Page: Link To Article

Dave Ramsey Financial Coaching Website: Link To Article

Josh on Twitter. Link

BloodStream Host Patrick James Lynch on Twitter and Instagram

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 7: December 19th, 2016 w/ Jeremy Griffin, Rich Pezzillo, Michelle Kim, & Bob Robinson

Click the play button below to stream the episode via SoundCloud!

BloodStream - Ep 7 Asset - Website Banner - V2.png

In this episode, Patrick reviews some recent headlines in our Trending Topics segment, shares some takeaways from the American Society of Hematology’s 2016 Annual Meeting during our Like, Share, Comment segment, and during a special Sit-Down segment, we hear from with Executive Directors of patient organizations and chapters from around the country on what 2016 was, and what 2017 could be. The good, bad and otherwise. All this and more on Episode 7 of BloodStream.

Sponsors for Episode 7

Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website

Supporting Sponsor: Entertainment to Affect Change (E2AC) Link to E2AC Website

Trending Topics

Hemophilia News Today publishes articles on “Pain and pain management in hemophilia.” Link

DailyMail.com reports on, “How a blood test could save you [UK Women] from infertility.” Link

Blood Journal publishes, “Patient Reported Outcomes to Assess Quality of Hemophilia Care in North India.” Link

MASAC publishes four new recommendations. Link

Like Share Comment

My Life, Our Future (MLOF) reaches 5,000 patients enrolled. Link

MLOF website: Link

Video on MLOF: Link

American Society of Hematology (ASH) Headlines of Interest:

Alnylam Pharmaceuticals presents interim results from study of investigational, subcutaneously-administered fitusiran (for patients with hemophilia A or B who also have inhibitors). Link

CSL Behring presents Phase III trial results from IDELVION (long-acting recombinant product for hemophilia B). Link

Novo Nordisk presents data from SMART-7 study of NovoSeven. Link

Sanagmo BioSciences presents data from SB-525, a gene therapy treatment currently being studied in mice and non-human primates. Link

Spark Therapeutics presents preliminary results from investigational, gene therapy agent SPK-9001 intended for the treatment of people with hemophilia B. Link

University of Pennsylvania scientists successfully cure mice with hemophilia B using CRISPR. Link

Octapharma announces two clinical trials studying how Wilate may be used to treat people with hemophilia A. Link

World AIDS Day at the National AIDS Memorial Grove Honors the Hemophilia Community.

Video of Powering Through panel featuring NHF CEO Val Bias, HFA CEO Kimberly Haugstad, COTT President Carl Weixler, and The Grove’s ED John Cunningham. Link

NHF CEO Val Bias letter regarding  HIV/AIDS Memorial. Link

Sit-Down Segment:

Jeremy Griffin, from the New York City Hemophilia Chapter

Rich Pezzillo, from the New England Hemophilia Chapter

Michelle Kim, from the Southern California Hemophilia Chapter

Bob Robinson, f rom the Bleeding Disorders Alliance of Illinois

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 6: November 21st, 2016 - w/ Ali Stroker.

Click the play button below to stream the episode via SoundCloud!

In Episode 6, Patrick introduces a new BloodStream co-host, touches on headlines of interest in our Trending Topics segment, dives into what the recent election may mean for the bleeding disorders community in our Like, Share, Comment segment, and discusses disabilities, entertainment, and the importance of partnership with Ali Stroker, the first Broadway performer who uses a wheelchair. All this and more on Episode 6 of BloodStream!

Sponsors for Episode 6:

Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website

Supporting Sponsor: Entertainment to Affect Change (E2AC) Link to E2AC Website

Trending Topics:

Save One Life Celebrates Its 15th Anniversary. Save One Life.net / Story on Gala

The American Society of Hematology's (ASH) Annual Meeting takes places December 3rd - 6th in Dan Diego, California. ASH's website

The Hemophilia Federation of America's Blood Sisterhood Program Launches The Sisterhood App for Women with Bleeding Disorders. Sisterhood App in iTunes

Paralyzed Monkey Walks Again. NPR Story

Should I Trust Wikipedia With My Health? NPR Article

Like, Share, Comment Segment:    

Blood Clots Dent Hopes For Hemophilia Drug Emicizumab. Link

Hemophilia News Today's Article on Emicizumab Data from World Congress. Link

YogaWorks Website. Link

HFA Responds to Election: We Are Always Here For You. Link

NHF Addresses Your Post-Election Health Questions. Link

Special Guest: Ali Stroker

Ali Stroker, Official Website. Link

Deaf W est Theatre. Link

 

 

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Ep. 5: October 17th, 2016 - w/ Jeanne White-Ginder.

Click the play button below to stream the episode via SoundCloud!

In Episode 5, we take a look at recent community news during our Trending Topics Segment- including a new virtual reality game designed to help reduce kids' anxiety during infusions and a new needle that won't cause bleeding after it's removed, and we take a deeper dive into three stories during our Like, Share, Comment Segment. This month we also feature a Sit Down with the iconic HIV/AIDS and hemophilia advocate Jeanne White-Ginder. All that and more on Episode 5 of BloodStream!

Sponsors for Episode 5:

Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website.

Supporting Sponsor: Entertainment to Affect Change (E2AC) Link to E2AC Website.

Trending Topics:

The National Hemophilia Foundation launches a new series of educational webinars. Link

Nationwide Children’s Hospital in Ohio is piloting a virtual reality game designed to help reduce anxiety and stress in pediatric infusions. Link

Genetic Linkage Analysis may lead to a simple way to diagnose women carrying the gene causing hemophilia A.  Link (Story) Link (Study)

A self-sealing hemostatic needle that won’t cause bleeding when removed from a vein. Link

Two tools  for patient reported outcomes address the need for personalization of outcomes Link.

Like, Share, Comment Segment:    

HFA Gears For Good Riders raise $130,000 for Helping Hands. Link

Barry Haarde completes his fifth trans-con bike ride, totaling 5,000 miles and raising over $52,000. Link

Alex Dowsett, the professional cyclist with hemophilia, launches Little Bleeders charity to encourage fitness and athletics for children with bleeding disorders. Link

Colorado’s Kyle Haas rides 500 miles through mountain passes. Link

Sleep resources curated and posted to The BloodStream Blog.

HIV now “undetectable” in British man. Link

Why talk of HIV cure is premature (from BBC). Link

Why it’s too soon to say HIV has been cured (from PopSci). Link

amf AR - statistics on young people and HIV (Link) and the US and HIV (Link)

The Sit Down:

USA Today’s Top 25 people (1982 - 2007). Link

The AIDS Memorial Grove. Link

The HIV Story Project. Link

Survivin g Voices, a collaboration between the HIV Story Project and The Grove. Link

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay