Ep. 31: MyBDC w/ Michelle Witkop and Maria Santaella - September 23, 2019
Ask The Expert Presents Hemophilia on Balance
Release Date: 09/23/2019
The Rare Factor – Deficiencies & Re-Balancing Strategies
Ask The Expert Presents Hemophilia on Balance
Join host Amy Board as we continue to dive into the evolving world of bleeding disorder treatments. This episode of Ask the Expert explores how emerging therapies—like rebalancing and non-factor agents—are tested, monitored, and kept safe. With insights from Drs. Mark Redding, Janice Stabler, and Tammy Singleton, we break down the complexities of dosing, breakthrough bleeds, and surgical planning, showing why safety checks and open communication with your care team are more critical than ever. Learn how these therapies fine-tune the clotting system without replacing missing factors and why...
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Women and Clotting - What You Need to Know
Ask The Expert Presents Hemophilia on Balance
In this episode of Ask the Expert, we focus on women with bleeding disorders — a group that has historically been overlooked in research and clinical care. Heavy menstrual bleeding, mild and moderate hemophilia, and von Willebrand disease have often gone underdiagnosed or mischaracterized, leaving many women without the care they need. Amy Board sits down with leading hematology experts to discuss emerging therapies, including replacement and rebalancing agents, the science behind how they work, and why representation in clinical trials matters. We also explore the challenges women face in...
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Inhibitors & Rares & Re-Balancing Explained
Ask The Expert Presents Hemophilia on Balance
This week on Ask The Expert, the script is being flipped for patients with inhibitors and rare factor deficiencies! For years, treatment options were scarce—or even nonexistent. Now, rebalancing agents are changing the game, restoring clotting balance without relying on replacement factors. Amy is joined by Dr. Ben Samuelson Jones, Dr. Tammy Singleton, Dr. Patrick Ellsworth, and Dr. Mark Redding as they take listeners on a journey through how these groundbreaking therapies are bringing new hope to people with hemophilia B, inhibitors, and ultra-rare bleeding disorders. From inhibitors to...
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Quick Recap! Your Clotting Cheat Sheet
Ask The Expert Presents Hemophilia on Balance
Rev your engines and put the pedal to the metal on a wild ride through the clotting cascade! Amy Board and a pit crew of medical experts take you on an uproarious recap journey through the first six episodes, using engines, dominoes, and treasure maps to drive their points home. But hold onto your helmets—there's fresh and exciting science just around the corner. It's a thrill ride through bleeding disorder mysteries—whether you're an old pro or new on the scene, this recap episode is the perfect pit stop before the high-speed chase into new discoveries. Presenting Sponsor: Presented...
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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...
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 research@hemophilia.org
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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