BloodStream

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:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

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

Subscribe to BloodStream Podcast: Link

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

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

Subscribe to BloodStream Podcast: Link

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

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

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

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

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

 

Subscribe to BloodStream Podcast: Link

 

Patient informed consent article: Link

Pfizer and Sangamo’s gene therapy trial paused: Link

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

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:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Wes Michael from Rare Patient Voice joins Amy and Patrick for a discussion about surveys and paid research opportunities in bleeding disorders before Josh Bragg returns with the latest installment of the Let’s Talk mental health segment.

 

Show Notes:

PRESENTING SPONSOR: Takeda

LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme

SEGMENT SPONSOR: Genentech

 

BLOODSTREAM MEDIA: All our stuff!

 

RARE PATIENT VOICE: Website

LET’S TALK SEGMENT: Website

 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Hemophilia patient advocate and Haement Creative Director Luke Pembroke returns to BloodStream to discuss his gene therapy clinical trial experience and Mel Forrest, writer and host of The Pain Podcast joins to share her chronic pain learnings from Season 3 (out now!) as well as some of her journey in storytelling. 

 

Show Notes:

PRESENTING SPONSOR: Takeda - bleedingdisorders.com

SUBSCRIBE: BloodStream Podcast on Apple Podcasts

CHECK OUT: All BloodStream Stuff

FIND OUR HOSTS ON SOCIAL: @patrickjameslynch @boardo87

 

Episode Notes:

THE PAIN PODCAST: Season 3 - Now Live!

LUKE PEMBROKE: Twitter, Instagram

 

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Amy and Patrick discuss how growing up with a chronic illness can lead to feeling “less than,” highlight recent articles on mild hemophilia and women in the community, and present the latest installment of Let’s Talk mental health with Joshua Sterling Bragg, featuring Dr. Emily Wheat.

 

Show Notes:

PRESENTING SPONSOR: Takeda

LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme

SEGMENT SPONSOR: Genentech

BLOODSTREAM MEDIA: CHECK OUT all our stuff

 

LINKS FROM THIS EPISODE:

• Females Account for 1 in 5 Mild Hemophilia Cases at US Centers
• Syrians Claim First Case of Girl With Both Hemophilia A and C

 

Find our Hosts on Social: @patrickjameslynch @boardo87

 

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

During last month’s Bleeding Disorders Conference, Believe Limited’s Science Fair  hosted a session that provided a brief overview of the state of science in bleeding disorders, featuring NHF CEO Len Valentino alongside hematologists and researchers Dr. Robert Sidonio and Dr. Jonathan Roberts. Audio provided courtesy of the National Hemophilia Foundation.

 

Show Notes:

PRESENTING SPONSOR: Takeda

SCIENCE FAIR SPONSOR: Spark Therapeutics

Register for NHF's State of the Science Research Summit

NHF Education on Rare Bleeding Disorders

Emicizumab PUPs and Nuwiq ITI Study

VISIT The Science Fair

SUBSCRIBE to BloodStream on Apple Podcasts

CHECK OUT all our stuff