bleedingdisorders

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Connect with BloodStream Media:

enDecember 09, 2022

An Interview With Darlene Shelton, Founder and President of Danny's Dose Alliance

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Darlene Shelton, founder and president of Danny's Dose Alliance, a Missouri-based nonprofit that seeks to ensure proper emergency medical care for all patients with hemophilia and other bleeding disorders.

enNovember 18, 2022

Are patient influencers a good thing?

A good one this week! Erin Willis, associate professor at the University of Colorado joins us to discuss the increasingly popular use of patient influencers in pharmaceutical marketing. The goal of her research is to explore how message design can influence people's understanding about their health and choices. Also, Jessica Richmond is back with another segment of The Well as she investigates how the past informs the present.

Show Notes:

Subscribe:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Genentech has local Clinical Education Managers (CEMs) who offer one-on-one support throughout your entire hemophilia journey.

To get in contact with a CEM, visit www.TalkToACEM.com

Connect with BloodStream Media:

enNovember 11, 2022

Patrick’s new freedoms and restrictions post-op, plus Michelle Conde and the Glanzmann's Research Foundation

Patrick shares life post ankle surgery and wonders if everything from now on will be impacted by hemophilia. Plus, a fantastic interview with Hemophilia of Gerogia’s Director of Advocacy, Michelle Conde AND members of Glanzmann's Research Foundation, Peter Z and Taylor Anne. We’ll cap the episode with another Let’s Talk mental health segment on acknowledging your past.

Show Notes:

Subscribe:

Check out the work Glanzmann's Research Foundation is doing!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on

how to care for your own or someone you love’s mental health and strives to eliminate the

stigma associated with this discussion within the bleeding disorders community. Visit

Letstalkmh.com and click Resources.

Brought to you by Sanofi

Connect with BloodStream Media:

enOctober 28, 2022

LGBTQ+ health issues w/ Dr. Nathan Connell and a vWD story of first pregnancy, labor, and delivery

On the heels of National Coming Out Day, BloodStream is joined by Dr. Nathan Connell, Clinical Chief of Hematology at Brigham and Women’s Faulkner Hospital to discuss LGBTQ+ health issues in the bleeding disorder community. Plus, Patrick reconnects with Annelise Ellis, longtime friend and fellow person with a bleeding disorder, as she shares with us her story of how von Willebrand disease impacted her first pregnancy, labor, and delivery.

Show Notes:

Subscribe:

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Connect with BloodStream Media:

enOctober 14, 2022

Panel: Diversity, Equity & Inclusion in bleeding disorders, plus “living in the moment.”

James Maple, sitting in for Amy, and Patrick present the audio from BloodStream’s Diversity, Equity, and Inclusivity panel during National Hemophilia Foundation’s Bleeding Disorders Conference as well as the latest from the Let’s Talk mental health segment. Plus, news from ICER on gene therapy!

Show Notes:

Subscribe:

Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement

Article:

Presenting Sponsor:

- Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

- CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

- Sanofi, visit ShareYourWhy.com to meet the CoRe team and hear stories from the hemophilia community.

- Pfizer, if you have sickle cell disease, how often do painful crises have you visiting the doctor? Learn more at ClinicalTrialSCD.com

Connect with BloodStream Media:

enSeptember 23, 2022

Abortion is Healthcare

Flow’s Sarah and Jessica sit down to discuss the fact that abortion is healthcare - and embark on a series of “straight talk about abortion” with part 1: Abortion Is Healthcare.

There are a myriad of medical situations in which pregnancy is a short-term experience. Review helpful terminology to engage in conversation. Upcoming episodes focus on: clinical situations that may call for abortion, necessary and currently missing reproductive health education, and current activism going on to support suffering menstruators.

Tune in for tips for self study, shared discoveries and to be part of the growing menstrual awareness movement! FLOW is straight talk about extreme periods, with new episodes the second Thursday of each month.

Program Notes:

Abortion Content and Resources

This American Life - https://www.thisamericanlife.org/774/the-pink-house-at-the-center-of-the-world
Shameless Mom Academy - https://shamelessmom.com/episode/amanda-kingsley-speaking-light-into-abortion/
Shout Your Abortion - https://shoutyourabortion.com/
Abortion Fund Network - https://abortionfunds.org/

HOST: Jessica RIchmond:

Website: jrich.online
IG, @jessicalaurenrichmond

HOST: Sarah Watson:

Website: sarahwatsonlpc.com
Podcast: Behind The Bedroom Door
Facebook: @sarahwatsonlpcsextherapy
IG, @swsxtherapy
Twitter @swsextherapy

FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/2rnK

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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

enAugust 11, 2022

FLOW with De Lune

FLOW’s Jessica and Sarah sit down with Mimi Millard of DeLune!

DeLune’s Whole Cycle support products use evidence-based research and the team is passionate about furthering clinical research into the period burden and the avoidance/endurance strategy that is common, but not normal!

Tune in for tips for self study, shared discoveries and to be part of the growing menstrual awareness movement! FLOW is with straight talk about extreme periods; monthly episodes the second Thursday of each month!

Program Notes:

Flow with DeLune

www.Delune.co / use code FLOWPOD20 for 20% off!
www.periodcramps.com / take the quiz, help the research study!

HOST: Jessica RIchmond:

Website: jrich.online
IG, @jessicalaurenrichmond

HOST: Sarah Watson:

FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/2rnK

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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

enJune 09, 2022

Val Bias, a tribute: "Life's work is in the getting there."

On December 30th, 2021, longtime bleeding disorders and HIV/AIDS advocate and former National Hemophilia Foundation CEO Val Bias passed away suddenly at age 63. This special episode features audio from numerous interviews that Val gave to BloodStream Media and Believe Limited across the years; it’s Val’s life, in Val’s own words, set alongside personal reflections from hosts Amy Board and Patrick James Lynch. Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

Buffalo New Obituary

Val Bias, 63, crusader for better care for those with hemophilia and HIV/AIDS: LINK

World Federation of Hemophilia

WFH VP Medical Glenn Pierce pays tribute to Val Bias: LINK

National Hemophilia Foundation

NHF Mourns the Loss of Longtime CEO, Val Bias: LINK

Connect with BloodStream Media:

nationalhemophiliafoundation

enJanuary 21, 2022

valbias

Menopause

Christie and Jessica speak to Dr. Heather Hirsch MD, MS, NCMPabout the close of reproductive years - as they close out the year, and season 01! Dr. Hirsch describes menopause as part of the full spectrum of menstrual experience and highlights the importance of including obstetrics as part of the complete medical history of mensturating patients. Plus, the FLOW team unpacks the stereo-types of “hot flashes”, the vitamin-market trend and the under-represented realities of menopause in media.

We close with extreme gratitude for Christie (and her tips) throughout season 01, and one more reminder that you are not crazy!

Program Notes:

Mentioned in the episode:

Dr. Heather Hirsch MD, MS, NCMP: https://www.heatherhirschmd.com/

“You’re Not Crazy” Article: https://pubmed.ncbi.nlm.nih.gov/9698634/
Find our Hosts on Instagram: @jessicalaurenrichmond @christie_publichealth

FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/pF5f

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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

enDecember 09, 2021

#48 - “Soaring to the Sky” How Patient Navigators are Changing Sickle Cell with Dr. Wally Smith

Dr. Z and Dr. C talk shop with Dr. Wally Smith on how Patient Navigators are changing sickle cell disease.

Show Notes:

Episode Sponsor: Novartis, For 40 years Novartis has been committed to helping individuals living with sickle cell disease. Through research, educational resources and access programs, we will continue our efforts to support patients, healthcare providers and caregivers.

For all inquiries: mailbag@bloodstreammedia.com

Dr. Lydia Pecker on Twitter

en-usDecember 07, 2021

#47 - “Reproductive Health in Sickle Cell” with Dr. Lydia Pecker

Dr. C and guest host Amy Board of BloodStream Media talk to Dr. Lydia Pecker about Reproductive Health in Sickle Cell. Hear Dr. Pecker’s thoughts on menstrual cycles with sickle cell, fertility, contraception and more on this important, little discussed topic. A must listen!

Show Notes:

Episode Sponsor: Novartis. For 40 years Novartis has been committed to helping individuals living with sickle cell disease. Through research, educational resources and access programs, we will continue our efforts to support patients, healthcare providers and caregivers.

Guest Host Amy Board on Twitter

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Guest Host Blaze Eppinger on Instagram

en-usNovember 30, 2021

#46 - Fueled by Connections: Agios and the Sickle Cell Community with special guest host, Blaze Eppinger and guest Sarah Gheuens, Chief Medical Officer at Agios Pharmaceuticals.

With the goal of getting a better understanding of Agios and their vision for partnering with the sickle cell community and being “fueled by connections,” join us as guest host, with special guest host, and patient advocate Blaze Eppinger returns to the show for a discussion with Agios’ and guest Sarah Gheuens, Chief Medical Officer, at Agios Pharmaceuticals.

Show Notes:

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Sickle Cell Disease (textbook) by Mark T. Gladwin, M.D.

en-usNovember 23, 2021

#45 - “Man in the Arena” A Conversation with Dr. Mark T. Gladwin

Cheat Codes welcomes Dr. Mark T. Gladwin to talk about Pulmonary hypertension in sickle cell disease with Dr. Z and Dr. C.

Show Notes:

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

en-usNovember 16, 2021

Sexism

In FLOW episode 11, Jessica and Christie host a panel conversation on sexism.

Panelists Sara, Jean, and Dr. Weyand share openly about their experiences of extreme menstruation - from both the patient and provider perspective - and how sexism has affected their ability to receive or deliver treatment.

The episode addresses internalized and externalized sexism, medical hierarchy, disparity of opportunity to enter medicine - and collective endured pain and trauma -

- grab your RBG doll, everyone!

Program Notes:

Recommended articles and resource-links mentioned in the episode:

Learn More About The Shematologist Dr. Weyand
- https://twitter.com/acweyand

Advocacy Organizations mentioned in this episode:
- The Period Movement https://period.org/
- Endofound https://www.endofound.org/

Book Recommendations
- Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Cleghorn
- Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
- The Doctors Blackwell: How Two Pioneering Sisters Brought Medicine to Women and Women to Medicine Hardcover by Janice P. Nimura

“You’re Not Crazy” Article:
- Dr. Elizabeth Blackwell https://www.pbs.org/newshour/health/elizabeth-blackwell-becomes-the-first-woman-doctor-in-the-united-states

Find our Hosts on Instagram: @jessicalaurenrichmond @christie_publichealth

FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/WT2t

Subscribe to Cheat Codes on Apple Podcasts

enNovember 11, 2021

In Remembrance of Hertz Nazaire

On October 29th, 2021, Hertz Nazaire, a prominent sickle cell warrior and prolific artist, passed away at age 48. In honor of Hertz, we’re re-airing Dr. Z’s interview with him for Cheat Codes, originally published in December of 2020.

Show Notes:

Homegoing Expenses for Hertz

Sickle Cell Disease: a battle for equality, justice and respect | Ahmar Zaidi | TEDxDetroit

Program Notes:

BloodStream Media - Cheat Codes - Website

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Guest Host Blaze Eppinger on Instagram

en-usNovember 08, 2021

#44 - Fueled by Connections: Agios and the Sickle Cell Community with special guest host, Blaze Eppinger and guests Darrin Miles, Agios Chief Commercial Officer and Agios Head of Patient Advocacy, Holly John

With the goal of getting a better understanding of Agios and their vision for partnering with the sickle cell community, join us as guest host, Blaze Eppinger speaks with Darrin Miles, the Chief Commercial Officer and Holly John, the Head of Patient Advocacy both of Agios Pharmaceuticals.

Show Notes:

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

Dr. Vijay Sankaran on Twitter

en-usOctober 26, 2021

#43 - “Can Gene Therapy Live Long and Prosper?” A Conversation with Dr. Mitch Weiss and Dr. Vijay Sankaran

Dr. Z and Dr. C chop it up with two of the foremost experts (Mitch and Vijay) on the science of gene therapy in sickle cell disease.

Show Notes:

Dr. Mitch Weiss Email at St.Judes

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)

en-usOctober 19, 2021

Men + Menstruation

In episode 10, the Flow team hands the conversation over to 3 non-menstruating men to unpack what they know about menstrual health and extreme conditions. They cover the generational gap in education, the information they get from Tik Tok, and how the pop-media explains hormonal spikes during the menstrual cycle as “women be moody”... candid and compassionate conversation leads the way on this episode of FLOW - straight talk about extreme periods!

Program Notes:

Recommended articles and resource-links mentioned in the episode:

Learn More About Our Guests

“You’re Not Crazy” Sex Education Article:
- https://www.guttmacher.org/state-policy/explore/sex-and-hiv-education

Find our Hosts on Instagram: @jessicalaurenrichmond @christie_publichealth

FLOW is sponsored by Takeda, the manufacturer of a treatment for adults with von Willebrand disease. To see if this treatment might be right for you and your needs, visit: https://ssshare.it/NwLr

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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

enOctober 14, 2021

#42 - Pediatric to Adult Care - Transitioning with Sickle Cell Disease w/ Dr. Nirmish Shah

Dr. Nirmish Shah, the Director of Duke University’s sickle cell transition program, joins Cheat Codes to discuss the numerous challenges associated with helping patients with sickle cell disease successfully transition from pediatric to adult care.

Show Notes:

For all inquiries: mailbag@bloodstreammedia.com (subject: Cheat Codes)