BloodStream

Edward Rogoff, Blood Brother, NY chapter board member, and author of Scary Diagnosis, joins us on today’s BloodStream. We hear the powerful stories behind community tattoos and get an update from PJL on his ankle surgery and recovery. This episode is full of resilience, creativity, and the strength we find in unexpected places. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: http://www.linkedin.com/in/edward-rogoff-6624366 Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Do you ever wonder who’s actually getting gene therapy around the world? So have we! Dr. Hank Greely from Stanford and Simon Fletcher, a nurse and PhD Candidate from Oxford, break it down in a way that’s eye-opening and real. Then stick around for Dr. Radek Kaczmarek’s update on the latest game-changing research. Two fascinating chats, one episode, this is BloodStream you don’t want to miss! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

What do a heartfelt short film, a Hollywood actress, and a powerful community story all have in common? This week’s BloodStream Podcast. Actress Sami Rappoport shares how her grandfather’s life with hemophilia inspired her latest project, and Dr. Joanna Davis sits down with Barb Forss and Jeffrey Moualim for a conversation you won’t want to miss. Jeffrey Moualim, Barbara Forss and Joanna Davis, M.D., discussion is in conjunction with CHESFoundation/LadyBugs Program Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Phil Gattone joins the latest BloodStream Podcast to preview NBDF’s upcoming Bleeding Disorders Conference, coming mid-August. Plus, Amy and Patrick take a trip down camp memory lane, sharing summer stories from their days at hemophilia camp. Tune in for a mix of updates and nostalgia. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Our bud, Max Feinstein, is back with us to share the outcome of his elbow surgery and he surprises us with a cover of Hemophiliac of Love (!!). Plus, the most pressing question when it comes to gene therapy for hemophilia B: How long does it last? Hanna does a deep dive into that very question with guest, Dr. Andrew Davidoff. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Rick Lindfors is cool. He lives with Type 3 von Willebrands and is on the Search and Rescue team for his sheriff's office in Oregon. He sits down with Patrick to chat about how he saw it as an opportunity to give back to his younger self, who, for a time, didn't have anyone coming to rescue them. Listen in to his inspiring story - only on BloodStream! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Dr. Erik Berntorp (medical doctor, researcher, and professor at Lund University in Sweden) joins us to discuss something special related to von willebrand disease and Matthew Zachary, award-winning Cancer Maverick, Keynote Speaker, and Pioneering Podcaster sits down with Patrick to chat all things advocacy and media! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

New treatment options are here for the hemophilia community! Learn more in Patrick’s conversation with Craig Benson and our latest Gene therapy segment that focuses on the psychological impact of gene therapy. Plus, we share news about the Genentech and Spark integration. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Stop the Bleeding! is celebrating 14 seasons of using comedy and entertainment to raise awareness and educate about hemophilia and other bleeding disorders. Join creator, director, and star, Patrick James Lynch, in a retrospective with director and writer Jim Fagan as they reminisce about the show’s characters and conflicts, and how entertainment & digital media was used to engage, educate, and inspire people with chronic conditions. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Watch the trailer for the latest season! AWARDS & HONORS 2018 LA Web Fest - Best Premise for a Comedy Series (Winner); Best Cinematography, Best Editing (Nomination) 2017 Imagen Awards - Best Web Series (Nomination) 2017 Brooklyn Web Fest - Best Ensemble (Nomination) 2014 National Hemophilia Foundation - Meritorious Service Award (Winner) 2013 Hemophilia Federation of America - Health & Wellness Award (Winner) It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

Join us for an episode dedicated to aging with hemophilia, with several stories from our community. We hear from Jeffrey Moualim & Barb Forss, and Patrick sits down with Prisilla Oren, while Hanna chats with Walter Justus. It’s a special episode to celebrate the strength of our community. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok

NBDF CEO, Phil Gattone, is back on the show to share his thoughts on the current events happening in our bleeding disorder community. Plus, Hanna speaks with Stanford law professor Dr. Hank Greely and legendary hematologist Dr. Margaret Ragni about how we know when gene therapy is the right choice—and is our system ready to support it? And, an interview with the founder of Hope Runs Red, Breana Sinkfield. All this and more! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film. Show Notes: Visit Hope Runs Red and watch or share your story! Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter

Potential Medicaid cuts are looming that could affect our community. Hear how you can take action! We also have exciting news about a clinical trial for von Willebrand’s disease and a special community story from Kayla Klein and her mother, Nancy Rodgers. Plus, Patrick has some fantastic updates from the WFH’s Comprehensive Care Summit in Dubai. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Medicaid Cuts - Take Action Today! Please call or email the offices you visited in March and remind your lawmakers that Medicaid is a lifeline: ask them to reject Medicaid funding cuts and other policies that would reduce coverage and disrupt care. For email, contact the staffer you met with at Washington Days (check your sent mail for the thank you notes). If you no longer have contact information for your lawmakers’ offices, you can call the Capitol switchboard at 202.224.3121 and ask them to connect you. Say or email: I am [calling/emailing] as a member of the bleeding disorders community and as a constituent to ask you to reject cuts to federal Medicaid funding. I am relying on you, as my Senator/Representative in Congress, to protect Medicaid from funding cuts and other policies that would reduce coverage and care. Medicaid covers life-sustaining treatment and care for up to one-third of the bleeding disorders community. Without Medicaid, low-income people with bleeding disorders will have no access to the regular care they need to prevent or treat painful, debilitating, and potentially life-threatening bleeding episodes. People will experience preventable health complications – and overall healthcare costs will rise. Please stand with the bleeding disorders community and so many others who rely on Medicaid, and reject cuts to this program that provides essential coverage to vulnerable individuals across the country. ** Hemab Therapeutics Announces Start of Velora Pioneer, a Phase 1/2 Clinical Trial Investigating HMB-002 for the Treatment of Von Willebrand Disease: Press Release More information about the vWD clinical trial participation Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter

One of our most stacked episodes in a while, featuring a chat and new music with Blood Brother, Trevor Martin. We also have Dr. Richard Lemon on the latest Gene therapy segment discussing the implications of recent hemophilia B gene therapy data. Plus, Allegra Hill and Kimberly Durdin from the only Black-owned birthing center in LA, and the visionary subjects behind our upcoming documentary Deliver Us. AND NYLI’s Shanthi Hegde & Eliza Marie VanZweden! Whew! 😅 Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. To learn more about Trevor and hear his music, visit trevormartinmusic.com To learn more about Trevor Martin's treatment, visit Hemlibra.com Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter

On April 1st, the Administration announced drastic changes and reductions to the federal health programs, one being the Division of Blood Disorders CDC, greatly affecting the bleeding disorders community. To discuss these concerns, we welcome a familiar face to many of you - Johanna Gray, federal policy advisor to NBDF and all-around wonderful human. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast The CDC cuts are of particular concern to our community. The Division of Blood Disorders’ work traces back to the 1980s’ tainted blood crisis, when CDC investigators were the first to discern and warn of HIV’s transmissibility through blood and blood products. To this day, the Division serves the bleeding disorders community and the nation at large through its public health surveillance activities – including maintaining a laboratory with blood samples dating back to 1996. The Division also funds the collection of key data on bleeding disorders through its “Community Counts” program, and supports educational outreach to increase patient and provider understanding of hemophilia and its complications. Elimination of the Division, its clinical repository, and its institutional knowledge would be a huge loss for the bleeding disorders community. WHAT CAN YOU DO? Call the Capitol switchboard: (202) 224-3121 *Anyone can call this number and get connected with their Senators and Representative. I am calling as a member of the bleeding disorders community and as a constituent to ask that you protect the federal hemophilia programs at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the hemophilia programs are housed. These programs: Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments. Provide funding for education and outreach to increase patient and provider understanding of hemophilia. Help to protect the safety of our nation’s blood supply. I’m very worried about what this means for people with bleeding disorders and our country. Please work to restore the staffing and activities of the CDC Division of Blood Disorders. I am relying on you, as my Senator/Representative in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program. ** For years, people with hemophilia A waited for a cure, while inhibitor patients were left behind—but now, after setbacks and failed launches of several gene therapies, investors think patients aren’t interested. By taking this short survey, you can make your voice heard and show investors that our community still wants a durable gene therapy, but this time for both hemophilia A with or without inhibitors. Take the survey here Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

In this special pop-up episode of the Bloodstream Podcast, host Patrick James Lynch discusses the discontinuation of two Takeda bleeding disorder products with Anthea Cherednichenko, Takeda's VP Franchise Head Hematology and Transplant. Additionally, the 'I'm Fine' segment, sponsored by Sanofi, explores why people cling to the notion of being 'fine' and the importance of embracing vulnerability for true resilience. I’m Fine is presented by @SanofiUS Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter

HFA Symposium is this weekend, and we have CEO Dan Kelsey on the podcast to tell us all about it! Plus, a gene therapy segment with the fantastic Brendan Hayes about what she’s hearing in the community about gene therapy for hemophilia B. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

HFA Symposium is this weekend, and we have CEO Dan Kelsey on the podcast to tell us all about it! Plus, a gene therapy segment with the fantastic Brendan Hayes about what she’s hearing in the community about gene therapy for hemophilia B. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

On this special pop-up episode of the Bloodstream podcast, we’re back with another 'I'm Fine' segment, which delves into the complexities of honesty and mental health. This episode features insights from Gabi Flores on the importance of addressing mental and emotional wellbeing, particularly for those managing chronic conditions. I’m Fine is presented by @SanofiUS Please share this survey with any friends you have with hemophilia A with or without inhibitors, who will help us educate the investment community on the need for new and better therapies. $50 gift card to each of the first 50 survey respondents! https://www.surveymonkey.com/r/geneventiv-2 Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter

Patrick chats with NBDF CEO, Phil Gattone, after his first Washington Days! Plus, Dr. Nathan Connell gives a terrific ASH Recap full of the latest research and development in bleeding disorders and Amy speaks with FLOW co-host, Jessica Richmond about women with bleeding disorders. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

On this episode we explore the concept of projecting a façade of being 'fine' while struggling internally, especially within the hemophilia community. Featuring insights from Austin Lerner, the episode delves into the importance of expressing vulnerability, embracing un-fine moments, and fostering open communication to truly address one's challenges. I’m Fine is presented by @SanofiUS Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter