BloodStream

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 Media on Social:

• BloodStream Facebook Page
• BloodStream Twitter Account
• 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: [email protected].

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!). Link to STB! Website.

Supporting Sponsor: Shire. Link to BleedingDisorders.com.

Contact BloodStream:

Submit a question for our Ask The Expert series (premiering 1/30) by emailing [email protected].

Trending Topics:

Registration is now open for:

• National Hemophilia Foundation (NHF) hosted Washington Days (March 8th-10th). Link
• Hemophilia Federation of America’s (HFA) 2017 Symposium (April 6th-9th). Link
• NHF’s 2017 Annual Meeting (August 24th-26th). Link

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

Steps-For-Living outlines Exercise and Activity Options for people with bleeding disorders. Link

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

NHF survey seeking men with hemophilia age 50 or older. Link

Like Share Comment:    

Meditation may help alleviate chronic pain, study shows. Link

Meditation App: Headspace. Link

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

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

Sit-Down Segment with NFL Super Bowl Champion Josh Gordy

Josh Gordy’s Freedom Financial Coaching Website. Link

Freedom Financial Coaching Facebook Page. Link

Dave Ramsey Financial Coaching Website. Link

Josh on Twitter. Link

BloodStream on Social:

BloodStream Facebook Page

BloodStream Twitter Account

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

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, from the Bleeding Disorders Alliance of Illinois

BloodStream on Social:

BloodStream Facebook Page

BloodStream Twitter Account

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

In Episode 6, Patrick introduces a new BloodStream co-host, touches on some 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 STB! website.

Trending Topics:

• Save One Life Celebrates Its 15th Anniversary. SaveOneLife.net / Story On Gala.
• The American Society of Hematology’s (ASH) Annual Meeting takes place December 3rd - 6th in San Diego, California. hematology.org.
• The Hemophilia Federation of America’s Blood Sisterhood Program Launches The Sisterhood App for Women with Bleeding Disorders. Sisterhood in the iTunes App Store.
• 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:

• BloodStream Facebook Page
• BloodStream Twitter Account
• BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

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 my 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
• 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:

• BloodStream Facebook Page
• BloodStream Twitter Account
• BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

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, 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
• Blues musician, Patrick Droney
• NFL Superbowl Champion Josh Gordy
• HIV/AIDS activist, Jeanne White-Ginder
• And many more!

Sponsors:

• Presenting Sponsor: NCHS. Link to NCHS's website.
• Supporting Sponsor: Stop The Bleeding! (STB!) Link to STB! website.
• Powering Through: Powering Through Website. Link to PoweringThrough.org.

Headlines Stories:

• 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

• BloodStream Facebook Page
• BloodStream Twitter Account
• BloodStream Host Patrick James Lynch on Twitter and Instagram.

Subscribe & Listen to BloodStream on any of these platforms:

• 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

In this episode, 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 855-838-5782. Link

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 1800-683-1288. Link

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.

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!

Official Website: BloodStreamPod.com.

Links & References:

Adventures of a Hemophiliac

Baby Boomers w/ Hemophilia Story

Barry Haarde Rides Again

Barry Haarde's Wheels for the World Facebook Page

Better You Know

Care Models For Hemophilia Management

Direct-to-consumer Marketing to People with Hemophilia

FDA Approves AFSTYLA

FDA Approves Epclusa

Gene-Editing Technology In People

HFA Blood Sisterhood Program

HFA Community Survey on Community Memorial

HTC Directory

Koate DVI Shipment on Hold

MASAC's Response to SIPPET

National AIDS Memorial Grove Recognizes Hemophilia

NHF Victory For Women Program

Patient Notification System

Save One Life

The X Factor

Listen to the full conversation w/ Dr. Glenn pierce in this piece of bonus content from Episode 1 of BloodStream.

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 "Likes, Comments, and Shares" 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!