The Stress of Shifting Roles with Cheri Clark
BloodStream
On this episode of BloodStream, Cheri Clark opens up about juggling life as a nurse, patient, caregiver, and board member, all while managing her own health. She shares the pressure of always saying “I’m fine,” the moments she’s pushed past her limits, and the lessons she’s learning about setting boundaries that actually stick. We also hear from Nicole Angeles, reflecting on her second pregnancy with vWD—a very different experience than her first. Together, their stories offer honest, grounded insights into balancing responsibilities, navigating health challenges, and...
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Blood Brothers - Part 2
BloodStream
This episode of the Bloodstream Podcast continues the Blood Brother Collaboration, featuring candid conversations among men living with bleeding disorders. Guests share personal stories of resilience, complicated grief, and the importance of community support. The discussion highlights the unique challenges faced across the lifespan, from childhood through aging, and emphasizes the value of open dialogue and mental health awareness. Listeners are encouraged to connect, share, and support one another through the Blood Brotherhood program and broader community resources. Presenting Sponsor:...
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Blood Brothers - Part 1
BloodStream
On this special episode of the Bloodstream Podcast, hosts Patrick James Lynch and Marc Pangilinan kick off a three-part Blood Brother Collaboration, featuring heartfelt stories and insights from men across the bleeding disorders community. The discussion centers on lived experiences, including complicated grief, joining the community, wearing multiple hats, and challenges across the lifespan. Listeners will hear candid conversations about overcoming obstacles, building support networks, and the evolution of treatment and community resources. Tune in for an inspiring and honest look at life...
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I’m Fine is back! Featuring Benjamin Denman
BloodStream
In this episode of BloodStream, we look back at the history of gene therapy and highlight key voices from Portraits of Progress. We also share the story behind I’m Fine, featuring community advocate Benjamin Denman, recently honored at the Hope Gala. Plus, we introduce HFA’s new Voice of the Community initiative and how you can get involved in shaping the future of bleeding disorders care and advocacy. Tune in and join us in reflecting on where we’ve been, where we are, and where our community is heading next. Presenting Sponsor: Takeda, visit to learn more. It’s a Whole New...
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The Red Ink Project & Global Action Network for Sickle Cell
BloodStream
This week on BloodStream, we’re talking to changemakers. Elsa and Ann Kendall from The Red Ink Project share how they’re shifting the story for women and girls in bleeding disorders. And advocate Lanre Tunji-Ajayi joins us to discuss building global networks for sickle cell and other inherited blood disorders. A conversation about voice, visibility, and what it takes to lead. Presenting Sponsor: Takeda, visit to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Beyond the Diagnosis
BloodStream
Art and science collide on this episode of BloodStream Podcast! Hosts Patrick James Lynch and Amy Board bring stories that inspire and inform the bleeding disorders community. Patty Weltin and the Beyond the Diagnosis exhibit show how artists bring portraits of children with life-altering diseases to life. These works travel to hospitals, medical schools, galleries, and museums, raising awareness and sparking connection. Hanna sits down with genetic counselor Kaylee Dollarshell to talk gene therapy—the science, the emotions, and the big decisions families face. A real, behind-the-scenes look...
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Joint Health and Gene Therapy - Live from BDC!
BloodStream
We’re live at BDC! Host Amy Board take you straight to the exhibit hall floor, chatting with doctors like Drs. Quon, Sidonio, and Radak, plus patient advocates Collin Johnson and Matt Capsel. From man-on-the-street interviews to a touching story from Greg, this episode reminds us all to run—not walk—towards science. Join us for real conversations, patient perspectives, and insights on gene therapy, joint health, and life in the bleeding disorders community. Next up: An inspiring interview with Patty Weltin and the “Beyond the Diagnosis” art exhibit. Don’t miss this...
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Channel swimmer (and blood brother!) Tim Stowers
BloodStream
On this episode of BloodStream, hosts Patrick James Lynch and Amy Board share stories of remarkable achievement and progress in bleeding disorders. Hear from Tim Stowers, a severe hemophilia A patient who has summited Everest and completed solo English Channel swims, as he shares his journey of resilience and determination. Plus, get the latest updates on Star Therapeutics’ lead VWD therapy, now entering a pivotal Phase 3 trial, and learn how patients can help shape the first validated VWD quality-of-life assessment tool. Presenting Sponsor: Takeda, visit to learn more. Show Notes:...
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WHO Guidelines Updated!
BloodStream
On this episode of BloodStream, we explore the World Health Organization’s updates to the Essential Medicines List and what they mean for bleeding disorders care. Hemophilia B mom and creator Jesseca Lockie shares her perspective on advocacy and storytelling online, while Domenic and his mom open up about how gene therapy has transformed his daily life. Real stories, important updates, and conversations shaping the bleeding disorders community. Presenting Sponsor: Takeda, visit to learn more. It’s a Whole New World Gene Therapy Segment brought to you by CSL Behring, which...
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Emerging treatment for vWD?!
BloodStream
Is there a new treatment for von Willebrand Disease on the horizon? This week on BloodStream, we’re joined by Jess Swann and Dr. Ben Kim from Star Therapeutics to talk about their promising pipeline and what it could mean for the vWD community. From science to support, they share their commitment to innovation and the people at the heart of it all. Plus, Patrick and Amy catch you up on the latest happenings—including the premiere of Dismissed! Don’t miss this insightful, energizing episode that dives into the future of bleeding disorders care. Presenting Sponsor:...
info_outlineOn 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:
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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:
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Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments.
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Provide funding for education and outreach to increase patient and provider understanding of hemophilia.
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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.
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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
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