Hear from Kristin Eilenberg of EE Minds about their state-of-the-art programs designed for parents who have children with medical conditions. With courses such as “I Am The Parent, Your New Normal, and Empowerment” and “Rules of the Road and Meaningful Consequences”, EE Minds is changing the way parents parent. Plus, HFA is back and a chat with Josh Bragg! A great episode!

Show Notes:

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Energizing & Empowering Minds

Living Beyond The Diagnosis

Testimonials

Program Overview

Learn and register for a program

Register for HFA Symposium 

Joint Damage Seen in Hem A Patients With Milder Disease, Few Bleeds

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It’s Rare Disease Day so we’re honoring our caretakers with a special interview with Brendan Hayes, a hemophilia mom who has had the opportunity to work with other rare disease groups as a national advocate. We’ve got another Let’s Talk segment featuring Josh Bragg’s journey to finding joy. A feel good, can’t miss episode!  Show Notes: Explore Rare Disease Day and Share Your Colors!

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Check Out Season One of Let’s Talk, a segment devoted to mental health in the bleeding disorder community. 

Let’s Talk - a film by Believe Limited, made possisble by Sanofi

Find Resources at Mental Health Matters Too

Presenting Sponsor: Takeda

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Patrick and Amy welcome new FLOW co-host and lady bleeder, Sarah Watson AND community member, Jim Mueller, who shares some cool ideas about financial planning. We’ll also introduce our new podcast The Global Hemophilia Report with Dr. Donna DiMichele. 

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution: Link

HR5801 - The Help Ensure Lower Patient Copays Act: Link

The Global Hemophilia Report: Link

Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia A and caregivers of children ages 1-17 years old with hemophilia A (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at [email protected].

Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia B and caregivers of children ages 1-17 years old with hemophilia B (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at [email protected].

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Dr. Guy Young is here to break down the latest data out of the BioMarin gene therapy clinical trial. We get a new Let’s Talk segment featuring Josh Bragg AND Patrick reveals a big secret. Don’t miss it! Show Notes:

Presenting Sponsor: Takeda

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BioMarin plans return to FDA with updated data on hemophilia gene therapy (BioPharmaDive): Link

BioMarin's hemophilia A gene therapy hits goal in phase 3, teeing up FDA filing despite durability doubts (Fierce Biotech): Link

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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

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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

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We hear from Save One Life and the World Federation of Hemophilia on what to expect in 2022, as well as some gene therapy trial updates. Patrick and Amy speak about the loss of Val Bias and preview a special episode honoring his life. 

Show Notes:

Presenting Sponsor: Takeda

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What’s the end of the year without Top Ten lists? Patrick and Amy did their own spin on the end-of-year Top Ten lists and you can’t miss it! We list our favorite episodes across the BloodStream Media network during 2021 and hear Patrick’s top discoveries since becoming vegetarian. 

Show Notes:

Presenting Sponsor: Takeda

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Top Ten BloodStream Media Episodes of 2021

1. Cheat Codes | What Just Happened - Best of Sickle Cell Conferences, #FSCDR21: Link
2. FLOW | What do hormones do?: Link
3. BloodStream | Best of BloodStream @ BDC 2021: Link
4. Cheat Codes | Impact Players on Third and Long: Santonio Holmes and Martenzie Johnson: Link
5. The Pain Pod | “Pushing Through the Pain” Link
6. Once Upon a Gene | How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue and Decision Fatigue with Counselor Rose Reif: : Link
7. BloodStream: The Birth Story: Welcome Vivian Bea! Link
8. FLOW | Men + Menstruation: Link
9. BloodStream: Howlin' Rays, coffee's the new vitamins, and Two Disabled Dudes! Link
10. BloodStream | Diversity, Equity, and Inclusivity in Bleeding Disorders w/ Connie Montgomery : Link

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Patrick and Amy welcome Dr. Len Valentino, CEO with The National Hemophilia Foundation and HFA CEO Sharon Meyers to give listeners a review of 2021 and lookahead to 2022. 

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

The National Hemophilia Foundation: Link

Hemophilia Federation of America: Link

Our Segment this month is made possible by Genentech

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Patrick and Amy welcome onto the show Connie Montgomery, a retired occupational therapist, active volunteer, and person living with Factor VII deficiency, who joins BloodStream contributor and social worker Alex Abreu Boria for an open conversation on issues and experiences related to diversity, equity, and inclusion in bleeding disorders.

Show Notes:

Presenting Sponsor: Takeda

 

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Patient informed consent article: Link

Pfizer and Sangamo’s gene therapy trial paused: Link

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Patrick and Amy are joined by hemophilia patients and advocates Laurence Woollard, Dakota Rosenfelt, and Richard Gorman to discuss their recently published article, Improving patient informed consent for haemophilia gene therapy: the case for change.

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

Patient informed consent article: Link

Pfizer and Sangamo’s gene therapy trial paused: Link

Connect with BloodStream Media:

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BloodStream on Facebook 

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