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Ask The Expert - A BloodStream Media Podcast

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United States

Language:

English


Episodes

Ep. 25: Do Our Stories Actually Matter w/Bruce Barnum - March 25, 2019

3/25/2019
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Ever wonder what happens after you meet with a legislator and their staff? Ever wonder what they do with your courageous, compelling stories? Can you actually affect policy changes by advocating? Do your stories even matter? Join us for a special episode of Ask the Expert as we pull back the curtain on the legislative process! This month our guest is Bruce Barnum, a former staffer to Senator Al Franken. Bruce gives a glimpse of what it is like working for a congressional office, the...

Duration:00:48:43

Ep. 24: Copay Accumulator Adjustment Programs Episode w/ Kollet Koulianos - February 25, 2019

2/25/2019
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Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The...

Duration:01:10:37

Ep. 23: Global Health w/ Chris Bombardier - January 28, 2019

1/28/2019
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New Ask the Expert host, Amy Board, sits down with previous ATE host Chris Bombardier! We ask Chris about his next adventure as the executive director of Save One Life and the future of the organization. Save One Life is a global non-profit founded by Laurie Kelley serving individuals and families affected by bleeding disorders in the developing world. Join us for a conversation with Chris as he explains the current realities of having a bleeding disorder in the developing world and what we...

Duration:00:34:23

Ep. 22: Travel w/ Donnie Akers - December 24, 2018

12/24/2018
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This month on Ask the Expert, community advocate Donnie Akers joins Chris to discuss the in’s and out’s of traveling with your bleeding disorder, such as navigating the airport with your medication, what rights you have as a person with mobility challenges and where to go if you run into trouble while on a trip. All that, plus- MASAC’s new guidelines that are incredibly important for you to know, pertaining to your rights as a person with a bleeding disorder in the emergency room- and more,...

Duration:00:51:06

Ep. 21: The Importance of Art - w/ Justin Levesque - November 26, 2018

11/26/2018
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In this episode of the Ask The Expert podcast, we interview Justin Levesque about the influence his bleeding disorder has had on his work as an artist, discuss how art can be used to express the challenges we face living with a bleeding disorder and how that unique experience can lead to powerful artwork. Justin also discusses his program “Blood Work”, an art exhibition of pieces created by individuals impacted by bleeding disorders at the National Hemophilia Foundation’s Annual Bleeding...

Duration:00:44:53

Ep. 20: Women with Bleeding Disorders - w/ Tammy Davenport - October 29, 2018

10/29/2018
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Imagine having all the symptoms, and even the diagnosis of hemophilia, but you constantly hear that it’s impossible for you to have the condition. You undergo surgery without having factor available, suffer from bleeds and are placed in life-threatening situations, despite the fact that your factor levels have consistently shown that you have hemophilia. While this sounds like an outrageous scenario, most women with hemophilia have lived this exact same story. On our “Women with Bleeding...

Duration:00:35:27

Ep. 19: The Model Volunteer - w/ Maryann May - September 24, 2018

9/23/2018
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Non-profit organizations couldn’t function without the critical work of VOLUNTEERS. Whether on the national or local level, volunteers help communities CONNECT. Volunteers serve on boards of directors, chair committees to organize fundraisers and events, stuff mailers to potential donors, and even set up tables and chairs for events. They do it all! That’s why the mighty VOLUNTEER is the focus of Episode 19 of the Ask the Expert podcast. Disclaimer: The content contained within Ask The...

Duration:00:29:18

Ep. 18: Career Counselor Episode - w/ Don Molter - August 27, 2018

8/27/2018
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Summer is already coming to a close and for many families that means their kids are heading back to school or off to college. It’s an exciting time, but what if you aren’t ready for college or you don’t feel like that’s the right path for you? How do you go about finding a career that fits your life with a bleeding disorder and how do you approach the challenges of applying and interviewing for those jobs? That’s what we are going to discuss on our Career Counselor episode of Ask the Expert...

Duration:00:38:44

Ep. 17: Mental Health - w/ Debbie de la Riva - July 23, 2018

7/23/2018
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Mental illness in the bleeding disorders community is a challenging topic to discuss, but given that approximately one-third of people with a chronic illness experience symptoms of depression, it’s clearly a topic in need of more attention. This month’s guest is Debbie de le Riva, community advocate and social worker. She joins host Chris Bombardier and guest co-host Patrick James Lynch for an open and honest discussion about depression, mental illness, and suicide prevention in the bleeding...

Duration:01:04:42

Ep. 16: Nutrition - w/ Tracy Mann - June 25, 2018

6/25/2018
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One of the easiest ways to keep our bodies healthy on a day to day basis is by eating well, but it’s also one of the hardest commitments to make. After a long hard day of work or school, it’s so easy to swing into a fast food restaurant or pop in a frozen pizza, even when we know we should go for something healthier. On today's podcast we will be exploring some of the myths around nutrition, tips for how to make healthy eating easier, and what effect food has on bleeding disorders. Our guest...

Duration:00:31:53

Ep. 15: Adoption - w/ Shari Luckey - May 28, 2018

5/27/2018
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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...

Duration:00:34:44

Ep. 14: Physical Therapy Episode - w/ Sharon Funk - April 22, 2018

4/22/2018
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There are many different healthcare providers that make up the the comprehensive care model at hemophilia treatment centers around the United States and much of the developed world. Physicians, nurses, social workers, physical therapists and many other healthcare professionals are all crucial team members in this model and can help individuals throughout their lifetime. Today for ‘Ask the Expert’, we will be focusing on the role of physical therapists in the care of individuals with bleeding...

Duration:00:43:59

Ep. 13: Gene Therapy Episode - w/ Dr. Marilyn Manco-Johnson - March 26, 2018

3/26/2018
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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 Thrombosis...

Duration:00:31:16

Ep. 12: Community Advocates - w/ Rich Pezzillo - February 26, 2018

2/24/2018
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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...

Duration:00:37:37

Ep. 11: Inhibitors and New Therapies - w/ Dr. Guy Young - January 22, 2018

1/21/2018
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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...

Duration:00:44:27

Ep. 10: Across The Globe - w/ Laurie Kelley - December 25, 2017

12/25/2017
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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...

Duration:00:41:20

Ep. 9: The Great Outdoors- w/ Pat Torrey - November 27, 2017

11/27/2017
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“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...

Duration:00:37:16

Ep. 8: Preparing for the Holidays - w/ Eric Iglewski - October 23, 2017

10/23/2017
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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 within...

Duration:00:31:41

Ep. 7: Aging with Hemophilia- w/ Randy Curtis - September 25, 2017

9/25/2017
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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....

Duration:00:22:12

Ep. 6: Back to School - w/ Carrie Koenig - August 28, 2017

8/27/2017
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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 of...

Duration:00:37:23