Patrick and Amy are live, in-studio, for the first BloodStream LIVE of the year! Join the hosts and a variety of special guests for segments on patient education, the return of in-person patient meetings, asking for help, and so much more- including an announcement about a major rare disease podcast joining BloodStream Media!
Notes:
Presenting Sponsor: TAKEDA - bit.ly/TakedaBDsite
Let’s Talk Segment Sponsor: SANOFI GENZYME - http://bit.ly/LetsTalkMHBSP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
SUBSCRIBE to Once Upon A Gene Podcast: bit.ly/OUAGspot
SUBMIT to the BIG BLOODY TALENT SHOW: bit.ly/BigBloodyTalentShow
SIGNUP for our FIRST-EVER NEWSLETTER: bit.ly/NewslettterSignups
Patrick and Amy catch up on some recent community news then speak with leukemia survivor and bone marrow transplant recipient Bob Falkenberg as he’s set to kick off his 10th Lifeblood cycling ride to support Be The Match.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
BloodStream LIVE May 26th - Event link: http://bit.ly/BloodStreamIsBack
Bob’s Team Lifeblood: http://bihttps://bit.ly/3yaPj2U
NHF’s Community Voices in Research: http://bit.ly/CVRNHF
CSL and uniQure close agreement: http://bit.ly/CSLuni
Experimental SubQ Inhibitor Treatment: http://bit.ly/SubQinhib
Patrick and Amy speak to Kathy Raufi on the brink on International Thalassemia Day, get input from the Coalition for Hemophilia B on some recent news, and discuss how von willebrand factor may be key to helping treat clotting disorders, too!
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
International Thalassemia Day #ITD2021
To learn more about iron overload, treatments, comorbidities with Thalassemia, and more, visit:
Thalassemia Foundation of Canada:
Cooley’s Anemia Foundation:
https://bit.ly/2RudLeX
Patients’ Stories:
Patrick and Amy are joined by Julie Kim, President of the Plasma-Derived Therapies Business Unit for Takeda, to discuss Takeda’s 5-year commitment to the WFH Humanitarian Aid Program. Then later in the show they’re joined by frequent contributor Alexa Abreu and her sister Juliemar - a former Teen Impact Honoree - to discuss the uncelebrated accomplishments of our youth and what supporting young people should actually look like.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
NOMINATIONS for the Teen Impact Awards: http://bit.ly/TIA2021bsp
TAKEDA joins WFH’s Humanitarian Aid Program: bit.ly/WFHTakeda2021
Patrick and Amy are joined by FLOW Podcast host Jessica Lauren Richmond to discuss assessing women’s health holistically and by Ruby Ball Foundation founder Ijeoma Azubuko to hear the harrowing story that led to her foundation’s innovative work. We also debut our new Let’s Talk mental health segment, featuring key moments from and expert insights into the Believe Limited documentary by the same name profiling mental health challenges in the bleeding disorders community.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme - http://bit.ly/LetsTalkMHBSP
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
FLOW Podcast: http://bit.ly/FLOWpod
Ruby Ball Foundation: http://bit.ly/RubyBallIG
Silent Podcast: http://bit.ly/SilentPodcastRBF
Amy and Patrick speak with students at Brown University who’ve been working with Save One Life in honor of World Hemophilia Day, and USP7 Foundation Chairman Bo Bigelow joins to discuss important news in the USP7 world on the heels of Hao-Fountain Syndrome Awareness Day.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
Breaking Through: https://bit.ly/3smEGpN
Teen Impact Awards: https://bit.ly/2Q9zXue
Help Save One Life: https://bit.ly/3elfs6f
Stronger Every Day Podcast: https://bit.ly/3tmui2v
USP7 Foundation: https://bit.ly/2Q6oEmH
DISORDER Rare Disease Film Festival: https://bit.ly/3gcv7qK
Amy and Patrick review MASAC’s new recommendations for women with bleeding disorders, provide an important update on a recent clinical trial investigation, and discuss bullying during COVID. Then filmmaker Ryan Gielen joins to talk about his new documentary, My Beautiful Stutter, now streaming on discovery+.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
MY BEAUTIFUL STUTTER: http://bit.ly/MBSLetMeSpeak
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
American Rescue Plan (ARP) info from NHF: http://bit.ly/NHFARP2021
Gene Therapy Clinical Trial Investigation: http://bit.ly/GTinvestigation2021
MASAC recommendations for women: http://bit.ly/MASACwomen
Cyberbullying in India: http://bit.ly/CyberIndia2021
Lunula Nutrition’s Delisa O’Brien joins Amy and Patrick to discuss our relationship to exercise and curative therapies. Then, Laurence Woollard joins to discuss his recent articles, one on adolescent transitional healthcare, the other on COVID-19’s impacting patient education through social media.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
Check out how to customize your exercise routine with Takeda at http://bit.ly/LivingHealthyBD
Delisa O’Brien - Lunula Nutrition Consulting
http://bit.ly/DelisaOnNutrition
Laurence Woollard - On The Pulse Consultancy
http://bit.ly/LaurenceInRareRev
http://bit.ly/LaurenceOnTwitter
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
Long-time physician and advocate of our community, NHF CEO, Dr. Len Valentino shares what this month of awareness means to him and what we can expect from the National Hemophilia Foundation in the months and years to come. We hope you felt celebrated and inspired during this month of awareness. From all of us at Bloodstream, we loved being with you during Bleeding Disorders Awareness Month!
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/
Today we are traveling to the Caribbean island of the Dominican Republic with our guest, Dr. Ana Yolanda Santos, to celebrate World Hemophilia Day. To honor the language of the people of the Dominican Republic, the conversation in this episode is completely in Spanish. Dr. Ana Yolanda shares her migration story to the United States, what life is like in the DR for people with bleeding disorders, and what we can learn from the Dominican people to enhance the quality of life for the bleeding disorders community in the United States.
To connect with Dr. Ana Yolanda Santos: dra.yolandasbj@gmail.com
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/
In 2017, Puerto Rico made international headlines as Hurricane Irma and Maria hit the island, leaving Puerto Ricans without running water, electricity, and even shelter. Bleeding disorder community members were not exempt from this reality and faced unprecedented barriers to treatment and care. While still recovering from natural disasters, the island also endures challenges from the global pandemic that has touched the world. Anthony Llanes, Executive Director of the Hemophilia Chapter of Puerto Rico, shares with us the challenges faced by the bleeding disorders community, the chapter’s commitment to providing for families in need, and the resilience of the people of Puerto Rico.
Find the chapter’s website here: https://hemofiliapr.org/english/what-we-do/initiatives-campaigns.html
To get in contact with Anthony: hemophilia.aph@gmail.com
To donate click here
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/
Back from paternity leave, Patrick rejoins Amy as co-host. They debrief last week’s emotional episode before welcoming social worker and regular contributor Alexa Abreu on to discuss how each of us relates to food and the idea of dieting. Then community member Kevin Leurquin joins to share his journey overcoming serious mobility challenges.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
Sponsored by Takeda. Learn how healthy eating can help your joints and how to better manage your bleeding disorder with Takeda at, www.bleedingdisorders.com/living-well.
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
FIND KEVIN on Instagram: http://bit.ly/KevinLIG
It’s the Final Thursday of Bleeding Disorders Awareness Month, and that means Josh is back for his final moment for mental health. Today’s subject is Trauma, and he is joined as usual by Debbie De La Riva, who gives some expert opinions on where Trauma comes from, how it presents in the bleeding disorders community, and what we can do after experiencing a traumatic event. Let’s have a moment.
Mental Health First Aid Class:https://www.
Mental Health America Surveys:https://screening.
Free Support Groups Depression BiPolar Support Alliance:https://www.
New Harbinger Publications:https://www.
Join us for an interview with Dr. Glenn Pierce who gives a terrific overview on the purpose and value of MASAC, the Medical and Scientific Advisory Council. MASAC was created by the National Hemophilia Foundation in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community. This committee plays a vital role in treatment, advocacy, and research into our communities. Join us to learn more about how MASAC can affect your life with a bleeding disorder.
Program Notes:
Learn more about MASAC here: https://www.hemophilia.org/who-we-are/our-team/masac
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/
Join a candid roundtable with Chapter leaders, Rich Pezzillo, Sue Martin, and Maureen Grace as they share what makes our community so unique and what keeps them up at night.
Let’s celebrate Bleeding Disorders Awareness Month by lifting up our leaders who work tirelessly for the benefit of our community.
Program Notes:
Find your local chapter here: https://www.hemophilia.org/community-resources/resources-near-you/nhf-chapters
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 Dana Francis, Social Worker at University of California San Francisco, who specializes in supporting adults with bleeding disorders, as well as their partners and other family members.
What can individuals do to support themselves through the grieving process? Collective trauma / collective PTSD, caregiver / carrier grief, and transitional grief are discussed in today’s special episode of Bloodstream. Mental health resources are available at letstalkmh.com/resources
Hear our hosts on FLOW - straight talk about extreme periods, 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, Dana!
Let’s Talk, the mental health documentary featuring Dana Francois:
https://www.believeltd.com/project-lets-talk-mental-health
https://letstalkmh.com/resources
Find today’s 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/
This special episode of BloodStream features our newest team member, Vivian Bea Lynch! Patrick and Natalie are back to share Vivian’s birth story. While we are thrilled to share that Vivian Bea is safely in the world, her journey in getting here was unexpected, complicated, and, frankly, scary for her parents. Patrick and Natalie are health advocates who believe that sharing their and Vivian’s story will not only provide a means of processing for them, both can also amplify the normalization and awareness for complicated birth stories. They believe in the power of storytelling for good and for healing ...and this is Vivian’s story.
Program Notes:
LINKS from Nat: https://www.medpagetoday.com/meetingcoverage/acog/72600
It’s the third Thursday of Bleeding Disorders Awareness Month, and that means Josh is back to take a moment for mental health. Today’s subject is imposter syndrome, and he is joined as usual by Debbie De La Riva, who gives some expert opinions on where imposter syndrome comes from, how it presents in the bleeding disorders community, and what we can do when we are feeling like an imposter. Let’s have a moment.
Mental Health First Aid Class: https://www.
Mental Health America Surveys: https://screening.
Free Support Groups Depression BiPolar Support Alliance: https://www.
New Harbinger Publications: https://www.
Following our conversation on Diversity, Equity and Inclusion earlier this year, Kimberly Ramseur dives deeper into the experiences of people of color living with a bleeding disorder in the United States. This episode is the beginning of more conversations to highlight racial disparities and inequities within the American healthcare system. Black and Brown folk, we see you; we hear you.
Find Kimberly on linkedin! https://www.linkedin.com/in/kimberly-ramseur-jd-mph-07783994/
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/
Mason Bobro shares his experience as a transgender man with a bleeding disorder, including his views on preferred pronouns, gender dysmorphia, monthly periods, and safe spaces for LGBTQ+ patients.
Hosted by Drama Del Rosario
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/
Mel Forrest, host of The Pain Pod, is joined by guest Jeff Johnson to discuss what it means to be a blood brother and how it’s changed over the years.
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/
Singer, songwriter, and community member Max Feinstein shares the recent journey with his new record, Redefine. Max hopes to do his part to normalize chronic conditions and influence those around him to view those who live with them through a more compassionate lens through his art. Listen in to hear his compelling story and see how you can be involved in Max’s work! We’ll also hear more about the Better You Know campaign - a great episode this week!
Program Notes:
Better You Know Campaign: https://www.cdc.gov/ncbddd/blooddisorders/women/materials/index.html
Women with Bleeding Disorders Risk Assessment Tool: https://www.betteryouknow.org/i-want-to-know-for-women
Breaking Through: www.breakingthroughhemophilia.org
Nominate a Teen Today!: www.teenimpactawards.org
Support Max Feinstein here: https://fundraising.fracturedatlas.org/redefine-hemophilia
The Speakpipe Link: givemeanh.com
Listen to Max here: https://maxfeinstein.bandcamp.com/
It’s the second Thursday of Bleeding Disorders Awareness Month, and that means Josh is back to take a moment for mental health. Today’s word is depression, and he is joined as usual by Debbie De La Riva, who gives some expert advice on how to manage depression, how to talk to someone who is feeling depressed or suicidal, and where to find valuable mental health resources.
National Suicide Prevention Lifeline
800-273-8255
https://
Mental Health First Aid Class: https://www.
Mental Health America Surveys: https://screening.
Free Support Groups Depression BiPolar Support Alliance: https://www.
New Harbinger Publications: https://www.
The no BS Guide for Men dealing with Depression: https://www.
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/
Mel Forrest, host of The Pain Pod, is joined by guest Rebecca Hill to discuss HIV and HepC, the community today and Blood of the Paladin for National Women and Girls HIV Awareness Day.
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/
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/