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

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Screen Shot 2017-10-16 at 1.05.51 AM.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

 

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

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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

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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

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

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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

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

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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

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

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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

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

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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

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

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Write here...

Write here...

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:

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

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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

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Subscribe to BloodStream:

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

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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 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

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

Jorge on Twitter Link

Connect with BloodStream:

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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Announcing Two New Podcasts From BloodStream Media!

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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

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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

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Subscribe to BloodStream:

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

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

 

Listen to Episode 7 by clicking the play button on the audio player above, or follow any of these links to listen and subscribe on your podcast player of choice (recommended):

Description

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

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

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:

BloodStream on Social Media

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

Listen to Episode 6 by clicking the play button on the audio player above, or follow any of these links to listen and subscribe on your podcast player of choice (recommended):

Description:

In Episode 6, Patrick introduces a new BloodStream co-host, touches on headlines of interst 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:

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 West Theatre. Link

BloodStream on Social:

Subscribe to BloodStream:

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

Listen to Episode 5 by clicking the play button on the audio player above, or follow any of these links to listen and subscribe on your podcast player of choice (recommended):

Description:

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:

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

  • amfAR - 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

  • Surviving Voices, a collaboration between the HIV Story Project and The Grove. Link

BloodStream on Social:

Subscribe to BloodStream:

Ep. 4: September 19th, 2016 - w/ Great Moments from Powering Through.

Listen to Episode 4 by clicking the play button on the audio player above, or follow any of these links to listen and subscribe on your podcast player of choice (recommended):

Description:

In Episode 4, we take a look at recent community news during our Headlines Segment- including updates regarding the Zika virus, community advocacy efforts, and data collection, and we take a deeper dive into three stories- including one on zombies!- during our Like, Share, & Comment Segment. This month we also feature a Special Interview Segment! Made possible by our Presenting Sponsor NCHS (National Cornerstone Healthcare Services), our Special Interview Segment features Great Moments from Powering Through, a nationwide speaker series on obstacles and challenges, and includes soundbites from community members and inspiring friends such as:

  • Cross-country cyclist Barry Haarde
  • HIV/AIDS activist Jeanne White-Ginder
  • Blues musician Patrick Droney
  • NFL Superbowl Champion Josh Gordy
  • And many more!

Sponsors for Episode 4:

Headlines:

  • Plasma Protein Therapeutics Association (PPTA)'s Statement on Zika: Link
  • Food and Drug Administration's Revised Guidance on Zika: Link
  • Hemophilia News Today on Universal Case Report Form (U-CRF): Link
  • World Federation of Hemophilia's (WFH) Page on U-CRF: Link
  • Josh Gordy Educational Scholarship, 2016 Winners: Link
  • Josh Gordy H.O.P.E. Foundation: Link
  • Hemophilia Federation of America's (HFA) Premium Assistance Information (HR3742): Link
  • National Hemophilia Foundation's (NHF) Washington Days Fact Sheet: Link
  • Honoring Jeanne M Lusher, MD, Pioneer in Hemophilia: Link
  • Dr. Jeanne Lusher's Wikipedia page: Link

Like, Share & Comment Segment:    

  • Kid Captain: Kinzie Hemann. Link
  • HFA's Dear Addy Piece on Mental Health and Insurance. Link
  • MentalHealth.gov's Health Insurance Page. Link
  • Downtown Devil piece on the Zombie Walk. Link
  • Phoenix New Times piece on the Zombie Walk. Link
  • Arizona Hemophilia Association's Info & Registration Page for the Zombie Walk: Link

Powering Through:

  • Powering Through Official Website. Link
  • Powering Through YouTube Playlist. Link

BloodStream on Social:

Ep. 3: August 22nd, 2016 - w/ WFH World Congress Soundbites

Description

In Episode 3, we take a look back at a historic summer that saw the National Hemophilia Foundation's (NHF) Annual Meeting and the World Federation of America's (WFH) World Congress convene in Orlando for the largest gathering ever of people with bleeding disorders. In addition to featuring some conference related content, our Like Share Comment segment highlight a story on Elijah Warren, a high school swimming star with hemophilia as well as a recent article from John Hopkins University on the power of humor in healthcare. Finally, we close this month's episode with a remembrance of Matt Stinger, a community member and advocate who passed unexpectedly this month at 33 years old.

Headlines

Novo Nordisk’s B-HERO-S study has found, to the surprise of some, that many patients with mild or moderate hemophilia B in the United States experience their condition negatively impacting their career, education, and recreational activities- something that can be overlooked in those affected by mild or moderate hemophilia as opposed to severe. Link.

High schooler Federico Parres is one of five team members on the VEX Robotics World Championship Team F, responsible for creating Caerus-7, a ball-flinging robot. Federico lives with severe hemophilia A and plans on becoming an engineer one day. Link.

Bayers’ Hemophilia Awards Program recently announced 16 physicians and researchers from 11 countries who will receives grant money totaling about two million dollars, including 6 individuals from the United States. This is the fourteenth year Bayer has run this program. Link

A study published in the European journal Haematologica examines a new potential model for how to treatment patients with hemophilia A who undergo surgery. Something I personally find interesting given our ongoing need to learn more about aging with hemophilia. Link

The FDA has approved a new needleless reconstitution device called Baxject III for Shire’s long-lasting factor FVIII therapy Adynovate. For those familiar, it is a very similar device to that which is found in Advate. Link

Two medical advisory updates have been announced by the National Hemophilia Foundation regarding existing products:

NHF Medical Advisory 419 (four-one-nine) states that Bayer has announced a voluntary recall of two lots of Kogenate FS for a loss of potency. The lot numbers are 270TN1C and 270R978. For more information or to arrange for an exchange please call the Recall Processing Center at 855-838-5782Link

And NHF Medical Advisory 420 (four-two-zero) states that CSL Behring has announced a voluntary recall of two lots of Helixate FS for a loss of potency. Those lot numbers are 270TN1G and 270R979. For more information or to arrange an exchange for these products, call CSL Behring’s Customer Service at 1800-683-1288Link

Product Related Headlines (not mentioned in the show)

Genentech/Roche has released encouraging Phase 1/2 extension results for their investigational subcutaneous medicine, emicizumab-previously referred to as ACE910. Link

The Netherlands-based uniQure, a company self-described as a leader in human gene therapy, announced encouraging clinical data from their ongoing Phase 1/2 trail of AMT-060, an investigational gene therapy for patients with hemophilia B. Link

BioMarin has presented positive interim data from a Phase 1/2 clinical trial of BMN 270, an investigational gene therapy for people severe hemophilia A. The company has announced intent to begin another study with an eye toward regulatory approval in both the US and Europe. Link

CSL Behring’s hemophilia B therapy Idelvion shows promise after encouraging Phase 3 trial results. Link The company also posted positive results from a Phase III study from its FDA approved, hemophilia A treatment AFSTYLA, unique for being the first and only single-chain recombinant product available in the US.

Spark Therapeutics and Pfizer received Breakthrough Therapy Status from the FDA for expedited development of a hemophilia B gene therapy treatment SPK-9001. The treatment is currently also undergoing a Phase 1/2 clinical trial. Link.

Alnylam Pharmaceuticals announced positive results of a Phase 1 trial for their subcutaneous therapy fitusiran, designed to treat patients with both hemophilia A and B, with or without inhibitors. Link.

Like Share Comment Segment

NHF Daily, a digital recap of Annual Meeting. Link

WFH The Congress Daily. Link

High school swimming star Elijah Warren. Link

John Hopkins University article on therapeutic humor. Link

BloodStream on Social

BloodStream Facebook Page

BloodStream Twitter Account

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Ep. 2: July 18, 2016 - w/ Chris Bombardier

Description

In Episode 2, Patrick talks with guest Chris Bombardier about his quest to climb the seven summits- the highest peak on each of the seven continents- while living with severe hemophilia B. This, plus news headlines & our Like, Share, Comment segment for July!

Program Notes

  • Presenting Sponsor: Entertainment 2 Affect Change (E2AC) is a 501(c)(3) non-profit charity organization dedicated to creating original photo, video, and digital content aimed at affecting positive change in the world. Learn more about E2AC at http://bit.ly/BSEP1E2AC.

  • Interview Sponsor: Stop The Bleeding! (#STBhemo) is an award-winning, comedic webseries about bleeding disorders, now in its sixth season. Join the #STBhemo gang at camp! Camp Adonwanableed is the backdrop for our biggest, most ambitious season yet. Check it out: http://bit.ly/BSEP1STB.

Headlines

  • MASAC Publishes Their Recommendation Regarding the SIPPET Study - The National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC)'s recommendation in response to the SIPPET study can be found at: http://bit.ly/29gbg4e

  • KOATE DVI Shipments Are Put on Hold - The related medical advisory can be found at: http://bit.ly/29PAQ3S. Also, patients can sign up for the Patient Notification System from the Plasma Protein Therapeutics Association (PPTA), to be notified directly about the latest recall or withdrawal of both plasma and recombinant products at www.patientnotificationsystem.org.

  • Gene-Editing Technology About to Be Studied in People - Story link: http://bit.ly/29VD022

  • The FDA Approves Two New Products - Information on CSL Behring’s AFSTYLA for use by adults and children with hemophilia A can be found at: http://prn.to/25lmvQL and information on Epclusa from Gilead Sciences, indicated for people with hepatitis C can be found at: http://bit.ly/290Hwgp

  • NHF Launches New Website for Women With Bleeding Disorder Symptoms - The website is www.BetterYouKnow.org

  • NHF Publishes Guideline on Best Practices for Hemophilia Management - Story link: http://bit.ly/29bsXYz. Additional resource link: http://bit.ly/29LsWEG

  • National AIDS Monument Adds Hemophilia Recognition - Find information at: http://bit.ly/29MiFsS

  • HFA Launches Community Survey on HIV Memorial - Survey link: http://bit.ly/2a0r6Wx

Like, Share and Comment

Additional resources:

Hemophilia Treatment Center (HTC) Directory: http://bit.ly/16Lrgtn

National Hemophilia Foundation’s Victory For Women: https://victoryforwomen.org/

Hemophilia Federation of America's Blood Sisterhood Program: http://bit.ly/1qD1iPG

National Hemophilia Foundations's www.BetterYouKnow.org

Related links:

Barry Haarde's Wheels for the World Campaign: http://bit.ly/29LuY7S

Barry Haarde’s Wheels for the World Facebook Page: http://bit.ly/29RVnVb

Interview with Chris Bombardier

  • Chris is a Board Member of Save One Life: http://www.saveonelife.net/

  • Chris appeared as a guest of Powering Through, hosted by BloodStream host Patrick James Lynch, during Gateway Hemophilia Association’s Family Education Weekend. Watch video at www.PoweringThrough.org

For more news & updates for the bleeding disorders community, click here.

Ep. 1: June 20th, 2016 - w/ Glenn Pierce

Description

In Episode 1, Patrick talks with guest Dr. Glenn Pierce about inhibitors, the new SIPPET study, and the state of bleeding disorders around the world. This, plus our June "Like, Comment, and Share" section featuring stories about notable upcoming conferences and one young man's ambitious goal to raise money and awareness for hemophilia. All this and more on this episode of BloodStream!

Program Notes

For more news & updates for the bleeding disorders community, click here.