BloodStream

Alex Borstein joins BloodStream from the promo tour of The Marvelous Mrs. Maisel, Patrick covers highlights from a recent PEN article on gene therapy and clinical trials, and Natalie presents a piece on managing depression during the holidays. All that, plus a teaser from BloodStream Media’s latest pod BloodStream Journeys, and more, coming up on Episode 43 of The BloodStream Podcast.

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Subscribe to and rate The Ask The Expert Podcast

Subscribe to and rate BloodStream Journeys

Subscribe to and rate Cheat Codes: A Sickle Cell Podcast

Presenting Sponsor: 

Takeda:  http://bleedingdisorders.com

Segment Sponsor:

Like Segment made possible by Genentech: https://www.youtube.com/challengeacceptedshow Learn more about Genentech’s mental health workshops by calling 1-866-436-5427

Like Segment

Crazy Talk: I’m Afraid My Depression Will Ruin Everyone’s Holiday

Comment Segment

Volunteering for a Gene Therapy Clinical Trial?  Read This First.

Interview Segment:

Alex Borstein on NPR’s Fresh Air

Watch: The Marvelous Mrs. Maisel Season 3 on Amazon 

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Subscribe to and rate BloodStream Journeys

Subscribe to and rate Cheat Codes: A Sickle Cell Podcast

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Check out Believe Limited’s Other Work:

BloodFeed: bloodfeed.com

Bombardier Blood: bombardierblood.com

Hemophilia: The Musical: breakingthroughhemophilia.com

My Beautiful Stutter: mybeautifulstutter.com/

Stop The Bleeding!: stbhemo.com

Teen Impact Awards: teenimpactawards.com

The Science Fair: thesciencefair.org

Patrick shares moments from DISORDER: The Rare Disease Film Festival, author & advocate Cazandra Campos-MacDonald joins to discuss her new book Dear Hemophilia, we discuss Open Enrollment’s closing on December 15th, provide you a first-hand account of living with depression during A Moment for Mental Health, hear entertainment recs from Mama Sue, and more, on Episode 42 of The BloodStream Podcast.

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Presenting Sponsor: 

Takeda:  http://bleedingdisorders.com

Segment Sponsor:

Like Segment made possible by Genentech: https://www.youtube.com/challengeacceptedshow

Open Enrollment Closes Dec 15

Learn more and sign up

www.healthcare.gov

HFA’s Open Enrollment Guide

http://bit.ly/OpenEnroll20

DISORDER: The Rare Disease Film Festival

Official Website

https://www.rarediseasefilmfestival.com/

Cynthia Wade (Beyond Blue)

http://www.cynthiawade.com/

Kyle Anne Grendys (Fraser Syndrome & Me)

https://filmfreeway.com/FraserSyndromeandMe

Interview Segment:

Cazandra Campos-MacDonald - Dear Hemophilia

https://cazandracmacdonald.com/

A Moment For Mental Health Segment:

Okay, I’ll admit it: I’m depressed.

http://www.patrickjameslynch.com/blog/2018/5/19/okay-ill-admit-it-im-depressed

Support Groups

National Alliance On Mental Illness

www.nami.org

Depression and Bipolar Support Alliance

www.dbsalliance.org

Mama Sue’s Streaming Recs:

Modern Love

Tell Me Who I Am

90 Day Fiance

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Check out Believe Limited’s Other Work:

BloodFeed: bloodfeed.com

Bombardier Blood: bombardierblood.com

Hemophilia: The Musical: breakingthroughhemophilia.com

My Beautiful Stutter: mybeautifulstutter.com/

Stop The Bleeding!: stbhemo.com

Teen Impact Awards: teenimpactawards.com

The Science Fair: thesciencefair.org

Natalie interviews attendees of NHF’s 71st Bleeding Disorders Conference, Amy & Debbie recap a mental health session from the conference, and we preview a brand new podcast series featuring an incredible community story from Vanessa Flora.  Then, DISORDER: The Rare Disease Film Festival co-founder Daniel DeFabio joins Patrick to preview the 2019 festival and its films! All that, plus, safety updates from NHF & HFA, streaming recs from Mama Sue, and more on Episode 41 of The BloodStream Podcast.

Presenting Sponsor: 

Takeda:  http://bleedingdisorders.com

Segment Sponsor:

Genentech: https://www.youtube.com/challengeacceptedshow (Like Segment)

Safety News

Genentech Issues Statement on Hemlibra Particles; MASAC Responds (10/7)

NHF and HFA’s Joint Letter on Product Safety (10/1)

Interview Segment:

DISORDER: The Rare Disease Film Festival: https://www.rarediseasefilmfestival.com/

A Moment For Mental Health Segment:

Counseling

The Wingmen Foundation

www.wingmenfoundation.org

Better Help

www.betterhelp.com

Support Groups

National Alliance On Mental Illness

www.nami.org

Depression and Bipolar Support Alliance

www.dbsalliance.org

Mama Sue’s Streaming Recs:

Diet Fiction

For The Birds

Downton Abbey (the movie!)

Subscribe to and rate The BloodStream Podcast

Subscribe to and rate The Ask The Expert Podcast

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Check out Believe Limited’s Other Work:

BloodFeed: bloodfeed.com

Bombardier Blood: bombardierblood.com

Hemophilia: The Musical: breakingthroughhemophilia.com

My Beautiful Stutter: mybeautifulstutter.com/

Stop The Bleeding!: stbhemo.com

Teen Impact Awards: teenimpactawards.com

The Science Fair: thesciencefair.org

NHF’s 71st Bleeding Disorders Conference (BDC) is just weeks away, the stress of back-to-school season is in full effect, and might Tai Chi be, “An Ancient Remedy for Modern Times” that we all need?  Rick Starks says so! Nutrition consultant student Delisa O’Brien and Hong Kong-based singer/songwriter Kashy Keegan join the pod to talk about Sickle Cell Disease (SCD) and Charcot-Marie Tooth Disease (CMT), as September is an awareness month for both, and Spark Therapeutics Co-Founder & President Dr. Katherine High joins us to discuss her journey in gene therapy and the launch of TheScienceFair.org!  Plus, A Moment for Mental Health with Debbie and streaming recommendations from Mama Sue. All that, and more, on Episode 40 of The BloodStream Podcast.

Presenting Sponsor: 

Takeda: http://bleedingdisorders.com

Segment Sponsors:

Like Segment made possible by Genentech: https://www.youtube.com/challengeacceptedshow

Share Segment made possible by Sanofi-Genzyme: https://www.juneforjointhealth.org/

Like Segment:

How Stress Hits Women’s Brains Harder, from Prevention.com

Share Segment:

Rick Starks’ An Ancient Remedy for Modern Times

Comment Segment:

Sickle Cell Awareness Month

CMT Awareness Month

Kashy Keegan - The Best Is Yet To Come

A Moment For Mental Health Segment:

National Suicide Prevention Hotline:  800-273-TALK

Crisis Text Line:   Text CONNECT to 741741

Trevor Hotline:   866-488-7386

American Foundation of Suicide Prevention: www.afsp.org

Debbie de la Riva’s Website

Mental Health Matters Too Resource Guide

Take a free of charge, private mental health screening here: https://www.mhanational.org/

Mama Sue’s Netflix Recs:

Sharkwater Extinction

Diagnosis

Starbucks Unfiltered

Parting Shots:

Believe @ NHF 2019: http://believeltd.com/nhf2019 + https://events.hemophilia.org/ehome/bleedingdisordersconference/program-at-a-glance/

Save One Life: https://saveonelife.net/

Subscribe and rate: The BloodStream Podcast on iTunes

Listen to the latest: Ask The Expert Podcast

Stop The Bleeding!: stbhemo.com

Teen Impact Awards: teenimpactawards.com

BloodFeed: www.bloodfeed.com

The Science Fair: thesciencefair.org

Bombardier Blood: bombardierblood.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

Is gun control a healthcare issue?  Why is CBD everywhere? What new assistive device did Patrick buy?  We discuss it all, plus, Association for Healthcare Social Media Founder and President Dr. Austin Chiang joins to discuss his mission, Debbie de la Riva’s back to talk about National Suicide Prevention Month, and Mama Sue helps us wind down with her latest streaming recommendations. All that, plus a community share from Meredith Meyers- and so much more- on Episode 39 of The BloodStream Podcast.

Presenting Sponsor: 

Takeda.  Visit http://bleedingdisorders.com to learn more.

Segment Sponsors

“Like Segment” made possible by Genentech:

https://www.youtube.com/challengeacceptedshow

Subscribe and rate The BloodStream Podcast in Apple Podcasts

Listen to latest Ask The Expert Podcast

Show Notes

Housekeeping

BloodStream Media: bloodstreammedia.com

Stop The Bleeding!: stbhemo.com

The Science Fair: thesciencefair.org

Like Segment

What’s the Deal with CBD Oil?

Share Segment

Meredith Meyers’s First of His Kind 

Comment Segment

Is Gun Control A Health Care Issue?

A Moment For Mental Health Segment

National Suicide Prevention Hotline:  800-273-TALK

Crisis Text Line:   Text CONNECT to 741741

Trevor Hotline:   866-488-7386

American Foundation of Suicide Prevention: www.afsp.org

Debbie de la Riva’s Website

Mental Health Matters Too Resource Guide

Interview Segment w/ Dr. Austin Chiang

Association for Healthcare Social Media

Mama Sue’s Netflix Recs

In The Dark

Father Brown

Is Sugar The New Fat?

Parting Shots

Two women in Chicago are naming all the generic drugs

Whistler, Canada

Connect with BloodStream Media

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

This month on The BloodStream Podcast host Natalie infuses host/husband Patrick for the first time, on mic (and video)!  Listen to the discussion around first infusions, infusion anxieties, and more on our Special Infusion Segment. A new Mental Health Resource Guide is the focus of our Moment For Mental Health Segment with Debbia de la Riva; headlines out of ISTH will come during our Comment Segment; “Is Medicare’s position on pain management changing?” is the central question of our Like Segment, and Ivon Giron shares his powerful Finding My Purpose piece during our Community Share Segment.  All that, plus Mama Sue, Parting Shots, and so much more on Episode 38 of The BloodStream Podcast.

Presenting Sponsor: 

Takeda.  Visit http://bleedingdisorders.com to learn more.

Segment Sponsors

“Like Segment” made possible by Genentech: https://www.youtube.com/challengeacceptedshow

“Share Segment” made possible by Sanofi Genzyme: https://www.sanofigenzyme.com/

Subscribe and rate The BloodStream Podcast in Apple Podcasts

Listen to latest Ask The Expert Podcast

BloodStream Media: bloodstreammedia.com

Stop The Bleeding!: stbhemo.com

Teen Impact Awards: teenimpactawards.com

Bombardier Blood: bombardierblood.com

The Science Fair: thesciencefair.org

Like Segment

Medicare weighs whether to pay for acupuncture.

Share Segment

Ivan Giron’s Finding My Purpose

Comment Segment

ISTH Congress Daily

ISTH Academy App

#ISTH2019 on Twitter

A Moment For Mental Health Segment

Debbie de la Riva’s Website

Mental Health Matters Too Resource Guide

Infusion Segment

Nat & Pat’s First Infusion Video: 

https://bit.ly/2XJymxP

Mama Sue’s Netflix Recs

Exhibit A

The Royal

Bird Brain

Connect with BloodStream Media

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

In Part 3 of the Hemophilia and Young Adulthood podcast series presented by BloodStream Stories, members of the Hemophilia Association of New Jersey (HANJ) give their perspectives on DATING & INTIMACY, how hemophilia plays a role in a young adult’s FAMILY, and what they HOPE for the future of the hemophilia community. This conversation was recorded live on January 17th, 2018 at the Madison Hotel in Morristown, New Jersey and was co-hosted by BloodStream Media’s Natalie and Patrick Lynch. Series originally made possible by Takeda.

BloodStream Media is a podcast network built by and for the bleeding disorders community. Subscribe to BloodStream in Apple Podcasts or visit BloodStreamMedia.com to learn more. Produced by Believe Limited. 

Patient Organization Partner: The Hemophilia Association of New Jersey (HANJ). Learn more about HANJ and their mission by visiting http://hanj.org.

BloodStream’s Hemophilia and Young Adulthood series was originally made possible by Takeda. Visit bleedingdisorders.com to find useful tools and resources for managing life with a bleeding disorder.

In Part 2 of the Hemophilia and Young Adulthood podcast series presented by BloodStream Stories, members of the Hemophilia Association of New Jersey (HANJ) discuss PUSHING LIMITS and finding boundaries, the need for EMOTIONAL SUPPORT, various forms of PAIN MANAGEMENT, and troubling topic of SUBSTANCE ABUSE. This conversation was recorded live on January 17th, 2018 at the Madison Hotel in Morristown, New Jersey and was co-hosted by BloodStream Media’s Natalie and Patrick Lynch. Series originally made possible by Takeda.

BloodStream Media is a podcast network built by and for the bleeding disorders community. Subscribe to BloodStream in Apple Podcasts or visit BloodStreamMedia.com to learn more. Produced by Believe Limited. 

Patient Organization Partner: The Hemophilia Association of New Jersey (HANJ). Learn more about HANJ and their mission by visiting http://hanj.org.

BloodStream’s Hemophilia and Young Adulthood series was originally made possible by Takeda. Visit bleedingdisorders.com to find useful tools and resources for managing life with a bleeding disorder.

BloodStream Stories presents Hemophilia and Young Adulthood, a special three-part podcast. In Part 1, eight young adult members of the Hemophilia Association of New Jersey (HANJ) weigh in on the topics of IDENTITY as someone with a bleeding disorder; DISCLOSURE in school, professional, and social settings; and TRANSITIONS, such as those from high school to college, from college into the professional world, and from singledom to marriage. This conversation was recorded live on January 17th, 2018 at the Madison Hotel in Morristown, New Jersey and was co-hosted by BloodStream Media’s Natalie and Patrick Lynch.

Series originally made possible by Takeda.

BloodStream Media is a podcast network built by and for the bleeding disorders community. Subscribe to BloodStream in Apple Podcasts or visit BloodStreamMedia.com to learn more. Produced by Believe Limited. 

Patient Organization Partner: The Hemophilia Association of New Jersey (HANJ). Learn more about HANJ and their mission by visiting http://hanj.org.

BloodStream’s Hemophilia and Young Adulthood series was originally made possible by Takeda. Visit bleedingdisorders.com to find useful tools and resources for managing life with a bleeding disorder.

This month on The BloodStream Podcast, we breakdown “Clotting Factors: Aren’t They Basically All the Same?” from the May issue of  the Parent Empowerment Newsletter (PEN), we discuss one physician’s social media crusade to tear down “fake health news,” we listen to Tabitha White’s story of becoming a hemo mom after losing her hemophiliac father to AIDS, we interview European Haemophilia Consortium Chief Executive Officer Amanda Bok, and Debbie de la Riva leads the latest A Moment For Mental Health segment.  All that, and more, on Episode 37 of The BloodStream Podcast.

 Presenting Sponsor

• Takeda: https://www.bleedingdisorders.com

Segment Sponsors

• Like segment made possible by Sanofi Genzyme: https://www.sanofigenzyme.com/

• Breaking Through!: breakingthroughhemophilia.com
• Empowering Women! https://www.bloodstreampod.com/empowering-women

Subscribe and rate The BloodStream Podcast on iTunes

Listen to latest Ask The Expert Podcast

• Stop The Bleeding!: stbhemo.com
• Teen Impact Awards: teenimpactawards.com
• Robert Cooper on BSpod Ep 34: http://bit.ly/RobertCooperBSpod

Like Segment

This doctor is recruiting an army of medical experts to drown out fake health news on Instagram and Twitter

Share Segment

Tabitha White’s “Positively Undefined.”

Comment Segment

Clotting Factors: Aren’t They Basically All The Same?

A Moment For Mental Health Segment

The National Institute of Mental Health  

https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml

National Center for PTSD

https://www.ptsd.va.gov/

Interview Segment

Amanda Bok, CEO of European Haemophilia Consortium

Mama Sue’s Netflix Recs

Green Book

Your Inner Fish (Amazon)

Life In The Dog House

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