Ask The Expert - A BloodStream Media Podcast
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Ep. 15: Adoption - w/ Shari Luckey - May 28, 2018
In many developing countries, children that are born with chronic medical conditions are placed in orphanages. With limited hope for care in these situations one of the best hopes for these children is to be adopted. In this month’s Ask The Expert episode, we visit with Shari Luckey, the Adoption Advocacy and Outreach Coordinator for the Hemophilia Foundation of Michigan. Shari not only has personal experience adopting a child with hemophilia from a developing country but also works with...
Ep. 13: Gene Therapy Episode - w/ Dr. Marilyn Manco-Johnson - March 26, 2018
The concept of gene therapy has been floating around the hemophilia community for decades, but with recent success in clinical trials, we appear to be getting closer to having an FDA approved treatment. In this episode, we focus on understanding terminology and types of gene therapy, potential benefits and pitfalls, and the role of factor in a gene therapy world. Our expert for this month’s episode is Dr. Marilyn Manco-Johnson, Director of the University of Colorado Hemophilia and...
Ep. 12: Community Advocates - w/ Rich Pezzillo - February 26, 2018
Advocacy has long been a hot topic in the bleeding disorders community, but beyond office visits with state and federal legislators, what does it actually entail? If you have ever wondered about how you can become or grow as an advocate, this episode is for you! In this month’s episode of the Ask The Expert Podcast we catch up with Rich Pezzillo, Executive Director of the New England Hemophilia Association (NEHA) and long-time community advocate, who speaks about the many different ways we...
Ep. 11: Inhibitors and New Therapies - w/ Dr. Guy Young - January 22, 2018
The management of inhibitors continues to be one of the greatest challenges facing researchers, clinicians, and patients with hemophilia. Thankfully we seem to have taken a giant step forward vis-a-vie the introduction of Hemlibra, the first and only subcutaneous treatment option for patients of all ages who have severe hemophilia A and inhibitors. But what exactly is this form of non-factor replacement therapy? How does it work? And what should patients and families impacted by hemophilia...
Ep. 10: Across The Globe - w/ Laurie Kelley - December 25, 2017
For the last 27 years, Laurie Kelley has dedicated herself to educating and improving the lives of families impacted by hemophilia, hemophilia and inhibitors, and von willebrand disease, both here in the United States and internationally throughout the developing world. So as we say goodbye to 2017 and hello to 2018, what are some of the major considerations for our community both domestically and global? That’s what we’re here to discuss with this month’s guest, Laurie Kelley. Welcome to...
Ep. 9: November 27, 2017 - w/ Pat Torrey
“I can’t do that.” “That’s not for me.” “I’m not able to do that.” Thinking about the outdoors and outdoor activities can be intimidating for people living with a bleeding disorder. But should they be? Are the outdoors and experiential education in the outdoors really off-limits to people with bleeding disorders? That’s what we’re here discuss with this month’s guest, GutMonkey Founder and CEO, Pat Torrey, on Episode 9 - or, our Outdoor Education Episode - of The Ask The Expert...
Ep. 8: October 23, 2017 - w/ Eric Iglewski
Food, family, food, travel, more food, money, more food still- the holidays can be a really stressful time! On this episode, social worker Eric Iglewski from the Mary M. Gooley Hemophilia Center in Rochester, New York joins Ask The Expert to talk through important considerations for people with bleeding disorders to keep in mind as we rapidly approach the wonderful chaos that is the holiday season! Welcome to Episode 8 of the Ask The Expert podcast! Disclaimer: The content contained...
Ep. 7: September 25, 2017 - w/ Randy Curtis
In this episode Randy Curtis, the Hemophilia Council of California’s Board President and longtime community activist, joins Ask The Expert to answer questions on aging with hemophilia, and the how he and peers in the Baby Boomer and Generation-X populations view this historic point in treatment history. We address that, and more, on Episode 7 of BloodStream Media’s Ask The Expert podcast series! Disclaimer: The content contained within Ask The Expert is for informational purposes only....
Ep. 6: August 28, 2017 - w/ Carrie Koenig
In this episode Carrie Koenig, the Hemophilia Federation of America’s (HFA) Families Program Manager, identifies the most important considerations for parents and families preparing for back-to-school season. What should parents of children with bleeding disorders be thinking about? What resources are available to help parents prepare? How active should kids be in advocating for themselves with teachers, administrators, and classmates? We address these questions and many more on Episode 6...
Ep. 5: July 24, 2017 - w/ Dr. Steven Pipe
In this episode, Dr. Steven Pipe, a pediatric hematologist out of the University of Michigan who is also the chair of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) discusses the major takeaways from the International Society of Thrombosis and Hemostasis’ (ISTH) 2017 Congress, which took place this July in Berlin, Germany. Dr. Pipe shares the latest updates on non-factor replacement therapies, gene therapy, and more on Episode 5 of BloodStream Media’s...
Ep. 4: June 27, 2017 - w/ Katie Verb
In this episode, Katie Verb, the Director of Policy and Government Relations for the Hemophilia Federation of America, answers questions on health care legislation, advocacy, and the extraordinarily-troubling Better Care Reconciliation Act (BCRA) that has been drafted by Senate Republicans in an unprecedented and lightning-fast manner. What could the BCRA mean for our community and Americans at large, and what should we be doing about it? Find out on Episode 4 of BloodStream Media’s Ask...
Ep. 3: May 22, 2017 - w/ Dr. Robert Sidonio
In this episode Dr. Robert Sidonio, an Assistant Clinical Professor of Pediatrics at Emory University Hospital and the Clinical Director of Hemostasis/Thrombosis at the Children’s Hospital of Atlanta, answers questions on and about women with bleeding disorders. Dr. Sidonio is a leading expert in the treatment and management of women with bleeding disorders, and addresses topics such as common challenges, research gaps, and encouraging trends in Episode 3 of BloodStream Media’s Ask The...
Ep. 2: February 27, 2017 - w/ Dr. Arash Mahajerin
In this episode, pediatric hematologist Dr. Arash Mahajerin is back to answer listener-submitted questions on the future of portacaths for kids with hemophilia, what to do when mysterious bruising or joint pain begins to show, and marijuana- is it a legitimate form of medication, or not? His answers to those questions, and more, on Episode 2 of BloodStream Media’s Ask The Expert podcast series! Disclaimer: The content contained within Ask The Expert is for informational purposes only....
Episode 1: January 30th, 2017 w/ Dr. Arash Mahajerin
In this - our first! - episode, Dr. Arash Mahajerin, a pediatric hematologist at the Children's Hospital of Orange County (California) and Assistant Clinical Professor at the University of California, Irvine, answers listener-submitted questions about all things bleeding disorders in the first episode of BloodStream Media's Ask The Expert podcast series. Subscribe to Ask The Expert and check out BloodStream Media's other podcasts at BloodStreamMedia.com. Interested in learning more about...