Ask The Expert Presents Hemophilia on Balance

The latest episode of Ask the Expert features a conversation with Danna Merritt, a chronic disease social worker with over 50 years experience counseling parents of a child with a serious medical condition. Danna is creator and founder of Parents Empowering Parents (PEP), a decades long parenting program for the bleeding disorder community and Energizing and Empowering Minds, a non-profit with the mission of helping parents be parents, and kids be kids, in spite of their medical challenges. With her wealth of experience and a strong grasp of child development, Danna is the perfect expert mind to discuss the nuances of parenting. Danna answers real listener questions and shares tangible skills that parents can utilize. Listen in for a wonderful conversation has we celebrate the joys and struggles of parenting.

Welcome to Episode 27 - or our Parenting episode - of the Ask The Expert Podcast!

Follow the link below to follow Danna's non-profit Energizing and Empowering Minds and to connect to other parents in your area:

https://eeminds.org/

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Are you considering board service with your local chapter or a national organization? Maybe you are currently serving on a board and know the unique struggle this volunteer position can face. Join us for a special Ask the Expert episode as we sit down with Jorge de la Riva, former board chair of The National Hemophilia Foundation. Jorge shares his personal views of the role of a board member and how serving your community in this way can be rewarding for you and your family. "The best way to find yourself is to lose yourself in the service of others" - Gandhi.

Welcome to Episode 26 - or our The Value of Board Service Episode - of the Ask The Expert Podcast!

Follow the link below for continued resources on board service:

https://boardsource.org/

• "The best thing a new board member can do is listen."

• "The Board Chair/President is there to serve the community and staff, while execited the will of the board."

• "A solid working relationship between the CEO/executive director and the board chair is based on aligned values, transparency and clear directives from the board."

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 importance of telling your story and how policy is informed by YOU! This is your chance to see that your voices truly matter. A can't miss episode of Ask the Expert!

Welcome to Episode 25 - or our Do Our Stories Actually Matter Episode - of the Ask The Expert Podcast!

Follow the link below to find out who represents you in Congress: https://whoismyrepresentative.com/

Additional Resources: To find contact information for your local district offices, go to your member's website and find what office is closest to your home. Ask to meet with the member when they are back in town. Make sure to tell the staff what you'd like to discuss and have a flexible time-frame for the best chance of getting a meeting.

Follow the links below to see NHF and HFA's policy positions:

https://www.hemophilia.org/Advocacy-Healthcare-Coverage/Advocacy-Priorities

https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/policy-priorities/

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 National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient's story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can't miss episode of Ask the Expert!

Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast!

Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs:

https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you

Follow the link below to read about specific data about copay accumulator benefit structures:

https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html

Follow the link below for more information about copay accumulator adjustment programs:

https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html

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 National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient's story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can't miss episode of Ask the Expert!

Welcome to Episode 24 - or our Copay Accumulator Adjustment Program 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.

Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs:

https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you

Follow the link below to read about specific data about copay accumulator benefit structures:

https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html

Follow the link below for more information about copay accumulator adjustment programs:

https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 can do to help and bring awareness.

Welcome to Episode 23 - or our Chris Bombardier's Next Adventure 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.

Follow the link below to sponsor a child with hemophilia across the globe:

https://saveonelife.net/sponsorship

Follow the link below to contribute to Save One Life's scholarship program:

https://saveonelife.net/help-a-student-pay-for-college

Follow the link below to contribute to a family in the developing world start a business:

https://saveonelife.net/help-a-family-start-a-business

Follow the link below to send a child in the developing world to camp:

https://saveonelife.net/product/help-a-child-go-to-camp

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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, on episode 22 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.

MASAC's Guidelines for Emergency Department Management of Individuals with Hemophilia and Other Bleeding Disorders

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 Disorders Conference.

Follow Justin:

One Dynamic System

https://onedynamicsystem.com/

Instagram

@onedynamicsystem

Follow FOLX and enter your work into the next Blood Work exhibit here:

https://www.folxfolx.org/

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.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 Disorders" episode of the Ask the Expert Podcast, we dive into the challenges faced by women living with bleeding disorders and their struggle to receive a proper diagnosis and treatment, with our guest expert Tammy Davenport.

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.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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 podcast, with special guest Don Molter!

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.

Have a bleeding disorders-related question you'd like to submit to Ask The Expert? Excellent! You can email it to [email protected] (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.