Ep. 31: MyBDC w/ Michelle Witkop and Maria Santaella - September 23, 2019
Ask The Expert Presents Hemophilia on Balance
Release Date: 09/23/2019
Fixing the Scales - How Re-Balancing Agents Work
Ask The Expert Presents Hemophilia on Balance
In this episode of Ask the Experts, host Amy Board breaks down one of the most exciting developments in bleeding disorders treatment — rebalancing agents. Think of your body’s clotting system like a seesaw: when everything’s working right, it’s balanced. But in bleeding disorders, the scale tips. Instead of adding what’s missing (like clotting factors), rebalancing agents work by removing what’s getting in the way — helping to restore that balance in a totally new way. Amy is joined by Dr. Ben Samuelson Jones, Dr. Patrick Ellsworth, and Dr. Tami Singleton for a deep dive into how...
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Hemostasis and Current Treatments
Ask The Expert Presents Hemophilia on Balance
In this episode, Amy trades medical jargon for construction metaphors as she takes us on a journey through hemostasis, the body’s natural way of stopping a bleed. But what happens when the repair crew is understaffed—or missing entirely? That’s where factor replacement therapy comes in. Amy and our experts explain how it works, why timing matters, and how it helps people with bleeding disorders live safer, fuller lives. Whether you're new to the community or a longtime listener, you'll walk away with a better understanding of how the body works—and why treatment makes such a big...
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Pump the Brakes! – How Anti-Coagulation Works
Ask The Expert Presents Hemophilia on Balance
On this exciting episode of Ask the Expert, join Amy as we delve into the fascinating world of blood clotting and anticoagulant therapy. We'll explore the clotting process with fun and relatable party analogies, featuring expert insights from Dr. Ben and Dr. Patrick. Discover how vital components like Protein C, Protein S, antithrombin, and TFPI work together to maintain the body's delicate clotting balance, and learn about the latest advancements in hemophilia treatment in this engaging and educational deep dive! Presenting Sponsor: Presented by #MyHemophiliaTruth. Real stories. Powered by...
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The Big Three – Factor 8 + Factor 9 = Thrombin
Ask The Expert Presents Hemophilia on Balance
Dive into the crucial roles of Factor VIII, Factor IX, and thrombin in the blood clotting process. Hosts Amy and Patrick introduce expert Dr. Benjamin J. Samelson-Jones to discuss the interplay between these factors, including how they activate each other and form clots. Featuring insights from Dr. Mark Reding on the myriad functions of thrombin, this episode breaks down complex biochemical processes into easily digestible information for all listeners. Perfect for anyone looking to understand hemostasis and thrombosis better. Presenting Sponsor: Presented by Show Notes: Ask the...
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Striking the Right Balance – Why Does it Matter in Hemophilia Treatment?
Ask The Expert Presents Hemophilia on Balance
This episode of "Ask the Expert" titled "Striking the Right Balance – Why Does it Matter in Hemophilia Treatment?" delves into the concept of rebalancing in hemophilia treatment. Hosted by Amy Bord, the episode features expert insights from Dr. Ben Samuelson Jones, Dr. Patrick Ellsworth, and Dr. Mark Redding. They explain how hemophilia treatments can go beyond merely replacing missing clotting factors by using rebalancing agents that adjust anticoagulant proteins. The conversation emphasizes the importance of understanding the delicate balance between bleeding and clotting in the body, why...
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How Does Your Blood Clot?–The Clotting Cascade Explained
Ask The Expert Presents Hemophilia on Balance
In this episode of 'Ask the Expert,' host Amy Board dives into the clotting cascade and explains how our blood clots. Alongside experts Dr. Ben Samuelson Jones, Dr. Amy Dunn, Dr. Mark Redding, and Dr. Patrick Ellsworth, Amy unpacks the complexity of the hemostatic system, discusses new treatments for hemophilia, and explores both the clotting and regulating parts of this vital bodily function. Tune in to understand how the clotting system works and the exciting potential of new therapies in the field. Presenting Sponsor: Presented by Show Notes: Ask the Expert is produced by , and is...
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Introducing ASK THE EXPERT: Hemophilia, On Balance
Ask The Expert Presents Hemophilia on Balance
Ask the Expert is back with a twelve-episode deep dive into the evolving landscape of a groundbreaking new class of therapies in hemophilia treatment—rebalancing agents. Through expert insights and discussions, our new season, Hemophilia: On Balance, unpacks complex science to make it accessible and relevant to the hemophilia community. Episodes will be released monthly starting March 2025, with bonus content dropping weekly. Whether you’re a patient, caregiver, or healthcare provider, Ask the Expert empowers you to understand the latest advances and make informed decisions about...
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Ep 40 - TO THE FUTURE w/ Patrick James Lynch
Ask The Expert Presents Hemophilia on Balance
Our guest for this month is Believe Limited CEO and Bloodstream host, Patrick James Lynch. Ask the Expert is headed in a new direction and Patrick joins us to share what the future will hold for the Bloodstream Media network. Even though this will be the final episode of Ask the Expert, we are excited to announce the new path for our expert interviews, because they’re not going away! Listen in with Patrick and Amy as they share the new and exciting things coming from Bloodstream Media! Welcome to Episode 40, or To the Future! The final episode of the Ask The Expert Podcast! ...
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Ep. 39 - w/ Dr. Len Valentino (Part 2) - Get to Know the Expert
Ask The Expert Presents Hemophilia on Balance
Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO the National Hemophilia Foundation, Dr. Len Valentino! We’ll learn how Dr. Valentino got his start, what lessons he learned from treating patients, his interests in the global disparity of care, and his thoughts of the Michael Jordan documentary, The Last Dance! Join us to get to know Dr. Valentino a little better! Welcome to Episode 39 - or our Get to Know the...
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Ep. 39 - w/ Dr. Len Valentino (Part 1) - Become an Expert
Ask The Expert Presents Hemophilia on Balance
The National Hemophilia Foundation announced new leadership in Dr. Len Valentino weeks before the COVID-19 outbreak and his unique position to guide our community during this unprecedented time has been welcome. Dr. Valentino joins us on Ask the Expert this month to share a bit of his story and his thoughts on the pandemic could affect the bleeding disorder community. Dr. Valentino shares how NHF is addressing the current COVID pandemic, NHF’s national research agenda, and how COVID could impact the shift in treatment in hemophilia. We’ll also chat about the Bleeding Disorder Conference...
info_outlineAs a member of the rare disease community, bleeding disorder patients and their families are used to taking surveys, signing up for clinical trials, and/or sharing our thoughts about what it is like living with a bleeding disorder. So what makes this new initiative from the National Hemophilia Foundation (NHF) different? Join us for a conversation with NHF Head of Research, Michelle Witkop and Research Nurse Specialist, Maria Santaella as they share the details of MyBDC, a community-powered registry aimed at capturing the patient experience. MyBDC is a comprehensive, personalized registry that focuses on the entire family unit. Want to learn more? Join us for an in-depth conversation about MyBDC on Ask the Expert!
Welcome to Episode 31 - or our In-Depth Look into MyBDC Episode- of the Ask The Expert Podcast!
Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.
For more information and to enroll in MyBDC, click the link: mybdc.hemophilia.org
For specific questions email [email protected]
The enrollment process will take 2 to 3 minutes. Each family member, caretaker and/or patient will need to enroll. The initial survey will take 20 to 30 minutes.
All members of the family unit are encouraged to enroll. Patients, siblings, grandparents, caretakers, parents are able to enroll and create their own account. Currently, the platform only accepts adults, but a children’s portal is being created.
NHF has a newsletter, and research information is included. To sign up for the newsletter, visit www.hemophilia.org and scroll to the bottom of the page for the link.
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