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

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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

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

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

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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