BloodStream

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

http://bit.ly/DelisaOnTwitter

Laurence Woollard - On The Pulse Consultancy 

http://bit.ly/LaurenceInPEN

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: [email protected] 

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: [email protected] 

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.mentalhealthfirstaid.org/ Mental Health America Surveys:https://screening.mhanational.org/screening-tools/ Free Support Groups Depression BiPolar Support Alliance:https://www.dbsalliance.org/ New Harbinger Publications:https://www.newharbinger.com/

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/