Gayathri Rajaram talks about being the mother of Swedha Rajaram, a teenager with hemophilia. She shares her first experiences finding out about her daughter’s bleeding disorder, plus her family’s love for Indian classical dance.
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
FLOW’s Christie & Jessica speak with community member Sara Jestrab on today’s special daily dose of Bloodstream Media! Sara gives Christie & Jessica wonderful advice in honor of International Women’s Day.
Listen to the next episode of FLOW - straight talk about extreme periods on Thursday March 11th, wherever you get your podcasts!
March is Bleeding Disorders Awareness Month and The Bloodstream Podcast is bringing you short daily episodes. Find out more about all of Bloodstream Media shows at www.bloodstreammedia.com
Program Notes:
Thank you Sara!
Listen to FLOW - monthly episodes : )
Find our Hosts’ on Instagram: @jessicalaurenrichmond @howtotalktoyourdoctor
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
We introduce Doug Kerr to the community! Doug is the chief medical officer at Generation Bio, the company investigating non-viral gene therapy. Listen in to learn more about this fascinating science AND Jessica Richmond, co-host of FLOW, will join us to share a preview of her conversation with Dr. Paula James, hematologist, and founder of Let’s Talk Period during the March FLOW episode. A great listen!
Program Notes:
Check out Generation Bio: https://generationbio.com/
Subscribe/listen to FLOW, straight talk about extreme periods: https://www.bloodstreammedia.com/shows/flow
Let’s Talk Period: https://letstalkperiod.ca/
Follow Amy on Instagram
Follow Jessica on Instagram
During Bleeding Disorders Awareness Month, Thursdays are all about Mental Health. Join BloodStream producer and Creative Director at Believe Limited Joshua Sterling Bragg as he takes a moment for isolation. And it wouldn’t really be a mental health moment without our dear friend Debbie De La Riva to guide us through. Happy Thursday.
Mental Health Resources:
Workbooks: https://www.newharbinger.com/
Debbie’s Website: MentalHealthMatterstoo.com
NHF’s Steps for Living: https://stepsforliving.hemophilia.org/
HFA’s Learning Central: https://www.hemophiliafed.org/the-institute/
Let’s Talk - Mental Health: https://letstalkmh.com/resources
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
von Willebrand’s disease is the most common bleeding disorder, but did you know it still remains mostly a mystery? Listen in with Patrick as he provides a great overview on vWD, the tricky diagnosis process, the science behind it, and treatment options for those affected. Bleeding Disorders Awareness Month celebrates our fellow vWD bleeders too! Check it out to learn more!
Program Notes:
All About VWD from NHF: https://www.hemophilia.org/bleeding-disorders-a-z/types/von-willebrand-disease
CDC on vWD: https://www.cdc.gov/ncbddd/vwd/
Newly released vWD Guidelines: https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/von-willebrand-disease
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
Do you want to know the basics of hemophilia, or do you have a friend or family member that could use an overview? Bloodstream has you covered! Join us for this special episode, in celebration of Bleeding Disorders Awareness Month, as Patrick gives us the basics on Hemophilia A and B, treatment history, and HTC’s.
Program Notes:
Brush up on your Hemophilia Skills with NHF: https://www.hemophilia.org/bleeding-disorders-a-z
CDC on Hemophilia: https://www.cdc.gov/ncbddd/hemophilia/
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
To celebrate Bleeding Disorders Awareness Month, BloodStream is releasing daily episodes full of stories, history, and the people that make our community special. Start here with our first special episode as Patrick gives us the history behind Bleeding Disorders Awareness Month and the advocacy work it took, over decades, to become a reality.
Program Notes:
Learn more about how you can get involved during Bleeding Disorder Awareness Month with NHF: https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
Show your pride for Bleeding Disorders Awareness Month with these resources from HFA: https://www.hemophiliafed.org/for-patient-families/meetings-events/bleeding-disorders-awareness-month/
We Show Our Stripes for Rare Disease Day by welcoming NHF Education Specialist, Teen Impact Awards Host, and all-around wonderful advocate, Nikole Scappe to discuss her new book for rare bleeding disorders, Super Seven! Also, Amy shares a press release from NHF, WFH, and EHC on the recent Fitusiran clinical trial updates. A can’t miss episode of BloodStream!
Program Notes:
Register for the Super Seven Launch Party: https://www.hemophilia.org/events/nhf-book-launch-party
Fitusiran Press Release: https://www.hemophilia.org/news/sanofi-revises-fitusiran-dosing-regimen-to-mitigate-risk-of-vascular-thrombosis
Show Your Stripes For Rare Disease Day with NORD: https://rarediseases.org/rare-disease-day/
Amy and producer, Greg, share what Bloodstream has in store for Bleeding Disorders Awareness Month and Corey MacGregor, from Tremeau Pharmaceuticals, stops by to share her personal journey with chronic pain and why The Pain Pod was an opportunity she was passionate about.
SUBSCRIBE and listen to The Pain Podcast
Patrick and Amy discuss some of the topics presented during #EAHAD2021’s Virtual Conference before Amy’s joined by FLOW host Jessica Richmond for an interview with pediatric hematologist/oncologist Dr. Angela Weyand, aka the “Shematologist!”
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
CHECK OUT ALL OUR SHOWS: http://bit.ly/AllBloodStreamStuff
#EAHAD2021 on-demand: http://bit.ly/EAHAD2021
DR ANGELA WEYAND on Twitter: http://bit.ly/Shematologist
Patrick and Amy are joined by Effie Parks from the Once Upon A Gene podcast and Mel Forrest from Season 2 of The Pain Podcast! They also touch on recent bleeding disorders news and preview next week’s exciting expert guest!
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
CHECK OUT ALL OUR SHOWS: http://bit.ly/AllBloodStreamStuff
ONCE UPON A GENE PODCAST: http://bit.ly/EffiesShow
PAIN PODCAST: http://bit.ly/PainPodS2
Patrick and Amy are joined by Save One Life board member Natalie Lynch to discuss the organization’s focus to start the year as well as to share updates from her pregnancy journey! The three also discuss recently published non-viral gene therapy data and welcome on blood brother and musician Tamar Mitchell.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SAVE One Life: http://bit.ly/S1L2021
NON-VIRAL Gene Therapy: http://bit.ly/GenBio2021
TAMAR Mitchell IG: http://bit.ly/TamarMitchellIG
TAMAR Mitchell YT: http://bit.ly/TamarMitchellYT
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy discuss a recently published article by clinicians urging colleagues to educate their patients via social media. Then, our hosts bring on Brian O’Mahony to discuss his gene therapy clinical trial experience, his take on recent community news, and how the Irish Haemophilia Society has fared through COVID19.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
BRIAN on Twitter: http://bit.ly/BOMtwitter
TWITTER changing hematology: http://bit.ly/TwitterASH21
MEN born w hemophilia on gene therapy: http://bit.ly/RobustInquiry
GENE therapy trial placed on hold: http://bit.ly/GTtrialHold
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy discuss the long-awaited Von Willebrand Disease (vWD) guidelines published in the medical journal, Blood; provide an exciting update on a recent “Believe 19” guest, and speak to Camille Proctor, founder of The Color Of Autism Foundation.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
vWD Clinical Guidelines: http://bit.ly/vWDguidelines
FLOW podcast: http://bit.ly/FLOWBSM
PHILLY Famous podcast: http://bit.ly/PhillyFamousPodcast
COLOR of Autism Foundation: http://bit.ly/ColorOfAutism
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
#hemophilia #vonwillebranddisease #vwd #autism #podcast
Patrick and Amy review NHF’s FAQs regarding the COVID-19 vaccine’s safety for people with bleeding disorders, discuss recent healthcare legislative victories, and welcome Christie VanHorne and Jessica Richmond, hosts of BloodStream Media’s newest show full of straight talk about extreme bleeding: FLOW.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
FLOW podcast: http://bit.ly/FLOWBSM
CHRISTINE VanHorne on LinkedIn: http://bit.ly/CVHonLI
JESSICA Richmond on LinkedIn: http://bit.ly/JLRonLI
NEHA Fund for Max: http://bit.ly/nehamemorial
WASHINGTON Days registration: http://bit.ly/DCDays2021
COVID-19 Vaccine FAQs from NHF: http://bit.ly/COVIDvaccineNHF
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy kick off the new year with health equity specialist and community member Alexa Abreu to discuss the role diversity and inclusion plays in achieving health equity.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
ALEX on LinkedIn: http://bit.ly/AlexaOnLI
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy are joined by acclaimed pediatric hematologist and researcher Dr. Robert Sidonio for his take on the state of bleeding disorders as we close out this most unusual year. Happy Holidays!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
FLOW, a BloodStream show for women - http://bit.ly/BSMFlow
DHAMMA (Vipassana) - http://bit.ly/DhammaBSM
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy are joined by National Hemophilia Foundation’s (NHF) VP of Public Policy Nathan Schaefer and Senior Manager of Government Relations Bill Robie to discuss key differences between state and federal advocacy, unique challenges to state-level advocacy, and how NHF’s State Based Advocacy Coalitions (SBAC) program assists chapters with state advocacy.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
NHF’s State Based Advocacy Coalitions (SBAC) Program: bit.ly/NHFSBAC
HERTZ on Cheat Codes: bit.ly/cheatcodespod
PRESTON on Journeys: bit.ly/BloodStreamJourneys
GENE THERAPY article: bit.ly/GTfactor
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy are joined by hemophilia and sickle cell expert Dr. Michael Callaghan who provides major takeaways from #ASH20. They also discuss actor Amanda Fuller’s disclosing her son’s hemophilia and the Irish Haemophilia Society’s CEO Brian O Mahony disclosing his enrollment in a gene therapy clinical trial.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
AMANDA FULLER’s IG post: bit.ly/AFullerHemB
PEOPLE Magazine story: bit.ly/AFullerPeople
DIVERSITY & Inclusivity in research: bit.ly/BMSDICT
BRIAN O MAHONY’s gene therapy experience: bit.ly/BrianGThemB
IRISH TIMES story: bit.ly/ITFunCure
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - bit.ly/BSPYT20
Patrick and Amy discuss the importance of Giving Tuesday, the significance of #ASH20 (American Society of Hematology’s Annual Meeting), and they speak with a young man named Zachary who recently made an incredible commitment to Save One Life.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUPPORT Save One Life: https://bit.ly/S1L2020
S1L SCHOLARSHIP Program - Philippines: https://bit.ly/S1LScholarshipPh
WORLD AIDS Day w/ Jeanne White-Ginder: https://bit.ly/JeanneWAD2020
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Jeanne joins Patrick for a special World AIDS Day interview to discuss the current state of HIV/AIDS, the impact of the Ryan White Care Act 30 years after the bill’s passage, her experience through COVID, and much more!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
The BloodStream team shares gratitude, stories, and bizarre moments from Thanksgivings past, then Philadelphia Youth Basketball CEO Kenny Holdsman joins for a Believe 19 interview!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SEGMENT SPONSOR: Genentech - bit.ly/BloodlessBattle
TWITCH Rivals: bit.ly/2ZXZRTx
PHILADELPHIA Youth Basketball: bit.ly/PYBBSP20
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Natalie joins Patrick and Amy to discuss how coronavirus is impacting holiday plans, the Affordable Care Act’s Open Enrollment period- closing December 15th- and actor Damian Washington joins to tell us about his multiple sclerosis YouTube channel NoStressMS and much more!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
DAMIAN WASHINGTON’s website: https://bit.ly/DWNoStress
ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar
NHF’s Insurance Toolkit: https://bit.ly/32MufSs
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Policy experts Johanna Gray, a principal lobbyist representing the National Hemophilia Foundation (NHF), and Nathan Schaefer, NHF’s Vice President of Public Policy, join Amy and Patrick to discuss what the election results mean for bleeding disorders advocacy going forward. Plus, we pay tribute to beloved community advocate Donald “Ziggy” Douglas, who passed away suddenly earlier this week.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
LISTEN to BloodStream Journeys - https://bit.ly/BSJourneys
ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
Patrick and Amy discuss ICER’s recently published Evidence Report on Therapies for Hemophilia A as well as NHF’s Virtual Insurance and Reimbursement Conference. Then Amy interviews Nourbese Flint, the Policy Director for Black Women For Wellness, and we hear from the Assistant Secretary for Health, ADM Brett Giroir.
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
ICER’S EVIDENCE REPORT: http://bit.ly/ICERHemA2020
NHF’S INSURANCE CONFERENCE: http://bit.ly/InsurReimburse20
BLACK WOMEN FOR WELLNESS: http://bit.ly/bwwlaBSP
CHEAT CODES PODCAST: http://bit.ly/CheatCodesPod
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
LIKE BloodStream on Facebook - bit.ly/BSFB20
WATCH BloodStream on YouTube - http://bit.ly/BSPYT20
#hemophilia #ICER #healthinsurance #blackwomenforwellness #bleedingdisorders #bloodstreampod