Ep. 31: MyBDC w/ Michelle Witkop and Maria Santaella - September 23, 2019

Listen to Episode 31 on SoundCloud by clicking the play button below:

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Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

As 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.


BloodFeed: https://www.bloodfeed.com


Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter


Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 30: Hemophilia Foundation of Michigan - Camp Bold Eagle Team - August 26, 2019

Listen to Episode 30 on SoundCloud by clicking the play button below:

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Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

Hemophilia Foundation of Michigan’s Camp Bold Eagle is turning 50 this year! Camp Bold Eagle is the longest running summer camp for kids and teens with bleeding disorders in the United States and to celebrate this incredible accomplishment and to relish in the joy of summer camp, Ask the Expert invited staff of the Hemophilia Foundation of Michigan to join us as they reminisce about the history of camp, the amazing leadership that is developed at camp and share the evolution of Camp Bold Eagle. Whether you are a parent struggling with sending your child to camp for the first time or a seasoned camper that can’t wait to see your friends next summer, join us for a conversation about the history of bleeding disorder camps and unique power camp has to foster independence in all of us.

Welcome to Episode 30 - or our Summer Camp Special! 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.

Find a bleeding disorder camp in your area:

Hemophilia Federation of America Camp Directory

National Hemophilia Foundation Camp Directory

“The concept back then was to see what they could do rather than couldn’t do.“ -Sue Lerch

“Many chronic disease camps are designed to forget about disease, but hemophilia camp was designed to engage with the disorder to develop independence.” -Sue Lerch

“Camp is not about the place - it’s about the people.” - Tim Wicks

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 29: Does Treatment Adherence Mean Healthy Joints? w/ - Cindy Bailey, Ph.D - July 22, 2019

Listen to Episode 29 on SoundCloud by clicking the play button below:

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Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

Is a healthy joint an active joint or a stagnant joint? How many bleeds does it take to create damage? How does treatment adherence compliment our activity levels and joint health? Join us for the latest episode of Ask the Expert where nationally recognized physical therapist, Cindy Bailey, Ph.D, gives us the 101 on joint health, physical activity, and treatment adherence. Cindy is the director of physical therapy at the Los Angeles Orthopaedic Institute for Children and walks us through what defines joint health, how one bleed can create irreversible damage and the value of adhering to treatment regimens to stay active. Join us for a great Ask the Expert!

 

Welcome to Episode 29 - or our Does Treatment Adherence Mean Healthy Joints? 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 about joint health and physical activity, check out these resources:

Steps for Living: https://stepsforliving.hemophilia.org/step-up/treatment/treat-responsibly-today-for-a-healthy-tomorrow

Hemophilia Federation of America: https://www.hemophiliafed.org/understanding-bleeding-disorders/complications/joint-damage/

World Federation of Hemophilia: http://elearning.wfh.org/elearning-centres/prophylaxis/

Bayer Announces  A Voluntary Recall of Two Lots of Kogenate FS: https://www.hemophilia.org/Newsroom/Medical-Advisories/Medical-Advisory-425-Bayer-Announces-a-Voluntary-Recall-of-Two-Lots-of-Kogenate-FS

 

Quotes from Cindy Bailey, Ph.D:

“If you have better musculature around the joints, you will have fewer bleeds. ” -Cindy Bailey, Ph.D

“Up to the ages of 8-11, you can repair cartilage damage by a bleed.” - Cindy Bailey, Ph.D

“Adherence is incredibly important because any amount of blood in the joint can cause deterioration” -Cindy Bailey, Ph.D

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 28: Gender Bias in Healthcare w/ - Christie VanHorne - June 24, 2019

Listen to Episode 28 on SoundCloud by clicking the play button below:

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Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

Did you know that women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms? Or that, on average, it takes women ten years to be diagnosed with endometriosis? On the latest episode of Ask the Expert, we dive into this topic and the long history of women feeling dismissed or ignored when it comes to their health. We are joined by Christie VanHorne, a consultant with CVH Consulting, who has developed training modules to demystify gender bias in healthcare. Christie walks us through the tools of how to identify gender bias, what is best when we relate to doctors and clinical staff when trying to have our voices heard, and most importantly, she reminds us that this is a cultural systemic issue. A great listen for the bleeding disorder community!

Welcome to Episode 28 - or our Gender Bias in Healthcare 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 and contact Christie on her website and social channels to learn more and get a gender bias training in your area!

web: cvhconsultingllc.com

email: christie@cvhconsultingllc.com

Insta: cvhconsulting

LinkedIn: Christie VanHorne, M.Ed, MPH

FB: CVH Consulting, LLC

Quotes from Christie:

“Women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms” -Christie VanHorne

“Our genetics determine how we manifest disease and yet medicine is not research to differentiate.”  - Christie VanHorne

“It is so hard to defeat the stereotype “it’s all in their heads” -Christie VanHorne

“Let’s shift our mindset towards seeing our doctors as partners in our care. They need us. We know when something is wrong.” -Christie VanHorne

BloodFeed: https://www.bloodfeed.com


Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter


Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 27: Creator and Founder of "Parents Empowering Parents" - Danna Merritt - May 27, 2019

Listen to Episode 27 on SoundCloud by clicking the play button below:

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Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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!

 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 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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com


Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter


Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Ep. 26: Value of Board Services w/ Jorge de la Riva - April 22, 2019

Listen to Episode 26 on SoundCloud by clicking the play button below:

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Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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!  

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 for continued resources on board service:

boardsource.org

Quotes from Jorge:

“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.”

BloodFeed: https://www.bloodfeed.com


Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter


Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 25 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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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 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!  

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 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/

 

BloodFeed: https://www.bloodfeed.com


Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter


Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 24 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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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 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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 23 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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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 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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 22 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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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, 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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 21 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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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 Disorders Conference.

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 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/

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 20 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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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 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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 19 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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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 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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 18 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

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

Listen to Episode 17 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

ATE Episode 17 - Debbie de la Riva - Banner.png

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 disorders community, and the work that she’s doing to make an impact.

NotOk app: https://www.notokapp.com/

Journal of Blood Medicine: Sue duTreil: Physical and psychosocial challenges in adult hemophilia patients with inhibitors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4114907/

Haemophilia: Iannone M, Pennick L, Tom A, Cui H, Gilbert M, Weihs K, Stopeck AT: Prevalence of depression in adults with haemophilia. https://www.ncbi.nlm.nih.gov/pubmed/22642565

HERO Study: http://www.herostudy.org/

Suicide Prevention Hotline:  1-800-273-TALK (8255) https://suicidepreventionlifeline.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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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. 

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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Subscribe to BloodStream:

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TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

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

Listen to Episode 16 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

ATE Episode 16 - Tracy Mann - Banner.png

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 on Episode 16 of ‘Ask the Expert’ is Tracy Mann, a registered dietician and founder of Everyday Nutrition, LLC, who shares with us some easy and helpful ways to eat and feel better!

Everyday Nutrition, LLC.

https://www.everydaynutritionllc.com/

Choose my Plate: Guide to helping you eat a more balanced diet.

https://www.choosemyplate.gov/MyPlate

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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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 mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

Listen to Episode 15 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

ATE Ep 15 - Banner - V1.png

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 individuals around the country to help them navigate the challenge adoption system. We explore her personal journey through adoption and learn about what the overall adoption process looks like. We also touch on the unique challenges this presents when the adopted child has a chronic medical condition.

To contact Shari, please visit the website below.

https://www.hfmich.org/what-we-do-adoption/

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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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 mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

Listen to Episode 14 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

Ask the Expert Episode 14 - Sharon Funk - Banner.png

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 disorders, how that has evolved in the decades since prophylactic treatment has become more common and what some of the new research shows in the bleeding disorders community. Episode 14, our physical therapy episode of the podcast features special guest Sharon Funk. Sharon Funk has been working as a physical therapist with the University of Colorado Hemophilia and Thrombosis Center for 41 years and has been a pioneer in the field of physical therapy and bleeding disorders.

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 mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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 mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

Listen to Episode 13 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

Ask the Expert Episode 13 - Dr. Marilyn Manco-Johnson - Banner.png

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 Center, who helps us get a better understanding of what gene therapy is and where the current technology stands. Welcome to Episode 13 - or our Gene Therapy 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.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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 mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

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

Listen to Episode 12 on SoundCloud by clicking the play button below:

Subscribe to Ask The Expert on iTunes: http://bit.ly/ATEiTunes

ATE EP 12 - Banner - UPDATE.png

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 can be advocates. Welcome to Episode 12 - or our Community Advocates 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.

Follow the link below and click the ‘Receive our Newsletter’ link to receive updates regarding healthcare updates referenced by Rich Pezzillo: http://www.hemophiliafed.org/advocacy/

Registration for the National Hemophilia Foundation's Washington Days: https://www.hemophilia.org/Events-Educational-Programs/Washington-Days

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.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 mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.