Latest Bleedingdisorders Podcast Episodes
New NBDF CEO, Phil Gattone
BloodStream - April 12, 2024 07:00 - 38 minutes ★★★★★ - 38 ratingsWe have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be...
Flow with Mariam Saparamadu
FLOW - straight talk about extreme periods - April 11, 2024 15:08 - 41 minutesA little education goes a long way. Mariam Saparamadu is passionate about bridging the gap between cultural experiences inside and outside the home. “If you are working with someone that continues to dismiss you and make you feel small, then they are not the provider for you… and you can ...
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman
BloodStream - March 22, 2024 07:00 - 45 minutes ★★★★★ - 38 ratingsDr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athlet...
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Birkman
BloodStream - March 22, 2024 07:00 - 45 minutes ★★★★★ - 38 ratingsDr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Birkman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athlet...
Flow with Hanna Beary
FLOW - straight talk about extreme periods - March 14, 2024 07:00 - 38 minutes“Men can have vWD and women can have hemophilia, I’ll say it again -” Hanna is a passionate advocate within the Bleeding Disorders Community. In today’s day and age - stating things that are true is important. Hanna has led the way since youth in progressing conversations, and acting as a voice ...
Highlights from ASH with Dr. Akshat Jain
BloodStream - March 08, 2024 08:00 - 44 minutes ★★★★★ - 38 ratingsWe’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Pe...
HFA CEO Dan Kelsey and Rare Disease Day tribute
BloodStream - February 23, 2024 08:00 - 1 hour ★★★★★ - 38 ratingsHFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: ...
NBDF welcomes new CEO; HFA responds
BloodStream - February 09, 2024 08:00 - 28 minutes ★★★★★ - 38 ratingsNBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day. ...
Flow with Amy Board
FLOW - straight talk about extreme periods - February 08, 2024 08:00 - 38 minutesIn this episode of FLOW, join hosts Jessica and Sarah and Amy Board from BloodStream Media for an engaging conversation about the challenges and experiences of women with bleeding disorders. The impact of bleeding disorders on menstrual health is multifaceted and profound, affecting physical hea...
Preserving Tainted Blood History and Bath Bleeds
BloodStream - January 26, 2024 08:00 - 49 minutes ★★★★★ - 38 ratingsWe’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a ba...
Shakeup at HFA and a brand new Gene Therapy segment!
BloodStream - January 12, 2024 08:00 - 45 minutes ★★★★★ - 38 ratingsIt’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement...
Flow with Jeanette Jones
FLOW - straight talk about extreme periods - January 11, 2024 08:00 - 39 minutesWhat is Flooding? What is tranexamic acid? What is a chromogenic essay? What is an MMB? What is the PBAC? And Who would be the douchiest of all douchebags? Answers to all this and more on January's FLOW with Jeanette Jones. Jeanette Jones is a menstrual health advocate and a connoisseur in...
SNL screws up sickle cell.
BloodStream - January 04, 2024 08:00 - 40 minutes ★★★★★ - 38 ratingsWe’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bomba...
Flow with Gillian MacSpurr
FLOW - straight talk about extreme periods - December 14, 2023 08:00 - 54 minutesGillian MacSpurr, an experienced running coach from the UK, joins the conversation to shed light on her personal journey with endometriosis. Her transformation from a non-athlete to a dedicated runner highlights the profound impact of movement on overall well-being. With her emphasis on personal...
The World Health Organization (WHO) gets it wrong
BloodStream - December 08, 2023 08:00 - 33 minutes ★★★★★ - 38 ratingsThe World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for ...
The Dark Side of Resilience + The Gratitude Game
BloodStream - November 24, 2023 08:00 - 44 minutes ★★★★★ - 38 ratingsHear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream P...
Resisting Change and Holiday Dynamics
BloodStream - November 10, 2023 08:00 - 22 minutes ★★★★★ - 38 ratingsAmy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it o...
Flow with Sexvangelicals
FLOW - straight talk about extreme periods - November 09, 2023 08:00 - 58 minutesBoston-based Sexvangelicals have made it their mission to cultivate self-compassion while navigating through the complexities of sex education in a religious context. Empower yourself with knowledge about menstruation and challenge the stigma in your religious community on this month’s FLOW. ...
Introducing PNH: Facts, Fiction & FYI!
BloodStream - November 03, 2023 20:25 - 21 minutes ★★★★★ - 38 ratingsThe BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI. Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we s...
Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams
BloodStream - October 27, 2023 14:00 - 35 minutes ★★★★★ - 38 ratingsMosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I’m Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the com...
Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset
BloodStream - October 13, 2023 07:00 - 55 minutes ★★★★★ - 38 ratingsWe’re back with another episode of BloodStream featuring Maya Bloomberg’s 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I’m Fine segment with Mark Skinner. Show Notes: Subscribe: The BloodS...
Flow with Dr. Abraham
FLOW - straight talk about extreme periods - October 12, 2023 07:00 - 46 minutes“I really think that if we got in there earlier, we could really shape things differently for (teens) and for those that care for (teens) too.” This month, Flow with Dr. Abraham and effective strategies for discussing puberty with teens. Plus, get reminders of the power of early and often con...
Dr. Akshat Jain and NHL coach David Quinn
BloodStream - September 25, 2023 15:59 - 53 minutes ★★★★★ - 38 ratingsDr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David...
Flow into our DM’s
FLOW - straight talk about extreme periods - September 14, 2023 07:00 - 22 minutesWhat if understanding your menstrual cycle was the key to unlocking your optimal health? Join Jessica and Sarah as they dive into the fascinating world of the cervix’s adjusting anatomy, the painful environment of menstruating with an extreme bleeding disorder, and the new reality of online a...
Embracing Change in Hemophilia Care and Back to School
BloodStream - September 08, 2023 07:00 - 31 minutes ★★★★★ - 38 ratingsAmy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I’m Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us! Show Notes: Subsc...
Patrick and Amy’s BDC Recap!
BloodStream - August 25, 2023 07:00 - 36 minutes ★★★★★ - 38 ratingsPatrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We’ll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different...
Taylor Swift changes Amy’s life, plus a new segment, and other stuff.
BloodStream - August 11, 2023 07:00 - 27 minutes ★★★★★ - 38 ratingsDon’t worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I’m Fine. This new segment aims to challenge our “normals” and...
Flow with Venus Zamora
FLOW - straight talk about extreme periods - August 10, 2023 07:00 - 45 minutesVenuz Zamora is an accomplished stage manager with a spirited heart, and her dedication to solutions spills over onto the stage of her life where she manages idiopathic thrombocytopenic purpura (ITP). Venus's story highlights the power of positive thinking and self-care: “I keep my platelets ...
NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren
BloodStream - July 27, 2023 07:00 - 35 minutes ★★★★★ - 38 ratingsThe National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don’t miss this one! Show Notes:...
It’s here: Gene Therapy for Hemophilia A
BloodStream - July 14, 2023 07:00 - 44 minutes ★★★★★ - 38 ratingsPatrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders. Show Notes: S...
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