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

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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:

Presenting Sponsor: NCHS. Link to NCHS's website.

Supporting Sponsor: Stop The Bleeding! (STB!) Link to STB! website.

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

Ari zona Hemophilia Association's Info & Registration Page for the Zombie Walk: Link

Powering Through:

Powering Through Official Website. Link

Powering Through YouTube Playlist. Link

 

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

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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.

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

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

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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!

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.

Learn more and register for National Hemophilia Foundation's (NHF) Annual Meeting by clicking here: http://bit.ly/BSEP1NHF.

Learn more and register for World Federation of Hemophilia's (WFH) World Congress by clicking here: http://bit.ly/BSEP1WFH.

UPDATE: In our segment on Row for Hemophilia we mistakenly reported that Chris Lee has hemophilia; in fact it is Jacob Pope who is living with hemophilia B. On June 23, 2016, eleven days after their launch the duo announced via their Facebook page that a number of adverse conditions culminated in a decision that they needed to turn back. Find details on Row For Hemophilia Facebook Page: http://bit.ly/BSEP1RFH.

Listen to Episode 1: Bonus Content - the Full Interview with Dr. Glenn Pierce: http://bit.ly/BSEP1BONUSINT.

Check out this Promo Video for The Impact Awards, taking place during NHF's Annual Meeting: http://bit.ly/BSEP1IAP.

Watch video from the inspiring speaker series Powering Through, and find information about the Powering Through session at NHF's Annual Meeting: http://bit.ly/BSEP1PT.

Read MASAC's recommendation on SIPPET: 

"MASAC Recommendation on SIPPET (Survey of Inhibitors in Plasma-Product-Exposed Toddlers"

There are also numerous community responses to SIPPET, including:

"The SIPPET Study & MASAC's Recommendation: What Does It Mean For Me?" (by Patrick James Lynch)

"SIPPET Study Simplified" (by Murali Pazhayannur), 

"What the Heck Is a SIPPET, and Why Should I Care?" (by Michael Birmingham),

"TheSIPPET Bombshell (starts on pp. 4)" (by Paul Clement, pp. 4).

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

 

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