Podcasts about sickle cell

In this episode of Cheat Codes, Dr. Z and Dr. C are joined by renowned advocates TaLana Hughes and Cassandra Trimnell to explore what “the sickle cell community” truly means. They discuss how patients, caregivers, providers, and allies form interconnected, and often overlapping, communities that bring hope, support, and change. From building trust to celebrating wins, the conversation highlights the power of connection, the importance of access to information, and how to find your “tribe” in the sickle cell space. Whether local or global, online or in person, community remains the heartbeat of progress in sickle cell disease.   SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease.  Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.     Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.   TRANSPARENCY STATEMENT  Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guests featured in this episode have been compensated for their time.  

Today we're joined by Reverend Zemoria Brandon (she/her), Administrator and Social Worker for the Sickle Cell Disease Association of America – Philadelphia/Delaware Valley Chapter (SCDAA-PDVC). Reverend Brandon is a passionate advocate for individuals and families impacted by sickle cell disease. She leads outreach, education, and advocacy efforts, and also chairs the SiNERGe “Shine the Light on Sickle Cell” campaign, raising awareness each year on during September - National Sickle Cell Awareness Month.  Rev. Brandon continues to be a powerful voice for equitable healthcare and compassionate care.

A growing body of research shows vaping is linked to fatal lung injuries, disease and acute respiratory illness, while nicotine harms brain development among teens. Lancaster County schools are trying to keep students from developing harmful addictions through vaping. September is National Sickle Cell Awareness Month, and a new toll-free hotline is connecting unaffiliated sickle cell patients with care in Pennsylvania. New rules and time limits are now in place for many older adults who receive food stamps but don’t work or have minor children. The changes are part of the Trump administration’s spending bill signed into law in July. More than a dozen explosives were seized from a Lebanon County home Tuesday, leading to an evacuation of the surrounding community. U.S. Steel will stop processing steel slabs at its Granite City Works plant in Illinois. In a statement, the Pittsburgh-based U.S. Steel said Tuesday that it'll “optimize” its operations by focusing instead on processing raw steel at facilities in Pennsylvania and Indiana. PA State Police have released traffic totals from the Labor Day holiday travel period. Troopers investigated nearly 750 crashes. In uncertain times, our community counts on facts, not noise. Support the journalism and programming that keep you informed. Donate now at witf.org/givenow. Support WITF: https://www.witf.org/support/give-now/See omnystudio.com/listener for privacy information.

Guest: Teonna Woolford, CEO & Co-Founder, SC RED Host: Dan Bulger, Progyny      Teonna had always known she wanted to have a lot of kids. At the age of nineteen, she discovered something that would change the trajectory of her life: she might be infertile due to sickle cell disease.   Despite years of managing sickle cell, in and out of hospitals, doctor's offices, and attending sickle cell conventions, no one had ever talked to her about the link between sickle cell and infertility. Unfortunately, fertility preservation was too financially out of reach.  But Teonna's story didn't stop there. She endured a failed bone marrow transplant, chronic pain, and the emotional toll of navigating a healthcare system that often overlooks the reproductive needs of those living with this chronic illness. Out of that struggle came a new purpose. Teonna co-founded SC RED (Sickle Cell Reproductive Health Education Directive) to raise awareness, expand education, and fight for equitable access to fertility care for those with sickle cell disease.  In this episode, Teonna opens up about her journey and why she's determined to ensure no one else faces the same barriers alone. This Sickle Cell Awareness Month, she hopes that the future of living with sickle cell can be about thriving and not just surviving.   For more information, visit Progyny's Podcast page and Progyny's Education page for more resources. Be sure to follow us on Instagram, @ThisisInfertilityPodcast and use the #ThisisInfertility. Have a question, comment, or want to share your story? Email us at thisisinfertility@progyny.com.    Watch this episode on YouTube:  https://youtu.be/tJXUXwChtA8 

Clara Nsenkyire speaks out about the daily reality of living with sickle cell disease. Joined by advocates Alexis Innis, Mary Coleman, and Beth Sinkler, we talk about the need for more research and the need for blood donors. Local organizations like the Fredericksburg Area Sickle Cell Association (fascaonline.com) and the American Red Cross (redcrossblood.org) are stepping up efforts to support affected families. Their message is clear: sickle cell disease can no longer be ignored.  

Ready for a deep dive into a real-life pediatric ICU situation? Today, Dr. Pradip Kamat, Dr. Monica Gray, and Dr. Rahul Damania will walk you through the case of a seven-year-old girl with Hemoglobin SC (HbSC) disease, who presents with abdominal swelling, pneumonia, low oxygen, and pain.In this episode, our team unpacks the spleen's anatomy and its crucial role in immunity, then zooms in on how sickle cell disease can throw a wrench in splenic function. You'll hear how they approach the diagnosis and management of acute splenic sequestration crisis, sharing clinical pearls along the way. Plus, they'll break down why quick recognition is so important and discuss strategies for both immediate and long-term care in pediatric sickle cell patients. Don't miss these practical insights from the frontlines of pediatric critical care!Show Highlights:Case study of a seven-year-old girl with hemoglobin SC diseasePresentation of symptoms: abdominal distension, pneumonia, hypoxia, and body painDiscussion of acute splenic sequestration crisis as a complication of sickle cell diseaseAnatomy and physiology of the spleenThe role of the spleen in sickle cell disease and how sickled cells affect splenic functionAcute splenic sequestration crisis, including clinical features and laboratory evaluationsManagement strategies for acute splenic sequestration crisis in the ICUImportance of blood transfusions and supportive care in treatmentProphylactic measures to prevent recurrence of splenic sequestrationEducational emphasis on recognizing clinical signs and the need for timely interventionReferences:Fuhrman & Zimmerman - Textbook of Pediatric Critical Care Chapter 88. Hemoglobinopathies. Baender, MA, Marsh Anne. Pages: 1457-1470Rogers' textbook of pediatric intensive care: Hematologic Emergencies. McCory MC, Bhar S, and Blaine E. Pages 2003-2005Brousse V, Buffet P, Rees D. The spleen and sickle cell disease: the sick(led) spleen. Br J Haematol. 2014 Jul;166(2):165-76. doi: 10.1111/bjh 12950. Epub 2014 May 26. PMID: 24862308.Waleed S, Aldabsa M, Gouher S. Splenic Sequestration Induced by Parvovirus B19: A Case Report. Cureus. 2024 May 23;16(5):e60937. doi: 10.7759/cureus. 60937. PMID: 38915956; PMCID: PMC11195323.Solanki DL, Kletter GG, Castro O. Acute splenic sequestration crises in adults with sickle cell disease. Am J Med. 1986 May;80(5):985-90. doi: 10.1016/0002-9343(86)90649-2. PMID: 3706382.Karna B, Jha SK, Al Zaabi E. Hemoglobin C Disease. [Updated 2023 May 29]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK559043/

The American Academy of Pediatrics release their own immunization schedule; The American Heart Association update 2017 guidelines for the prevention of high blood pressure; weight loss drug gains indication to treat noncirrhotic MASH; FDA approve a new fibromyalgia treatment; investigational SCD Tx to meet trial endpoint.

Anna talks with Dr. Lametra Scott., founder of Nashville's Breaking The SSickle Cell Cycle Foundation, Inc. Learn more at :btsscycle@gmail.com Also, get details on their Sickle Cell Warrior Walk & Run 5K happening Saturday September 6, 2025.See omnystudio.com/listener for privacy information.

About this episode:  Sickle cell disease affects an estimated 100,000 people in the United States. Recent advancements in gene therapies and medicines like hydroxyurea are diminishing extreme pain, reducing strokes, and extending survival times for those afflicted by the disease. In this episode: leading sickle cell disease expert Dr. Mark Gladwin explains how revolutionary new treatments work and discusses the challenges to access to life-saving care. Guest: Dr. Mark Gladwin is a physician-scientist and the Dean of the University of Maryland School of Medicine and Vice President for Medical Affairs at the University of Maryland, Baltimore. His research focuses include sickle cell disease and hypertension. Host: Dr. Josh Sharfstein is vice dean for public health practice and community engagement at the Johns Hopkins Bloomberg School of Public Health, a faculty member in health policy, a pediatrician, and former secretary of Maryland's Health Department. Show links and related content: New sickle cell gene therapies are a breakthrough, but solving how to pay their high prices is a struggle—CNBC Gene Therapy: What You Need to Know—Sickle Cell Disease Association of American No More Pain: Breakthrough Sickle Cell Treatment from Johns Hopkins Offers Curative Potential—Johns Hopkins School of Medicine Transcript information: Looking for episode transcripts? Open our podcast on the Apple Podcasts app (desktop or mobile) or the Spotify mobile app to access an auto-generated transcript of any episode. Closed captioning is also available for every episode on our YouTube channel. Contact us: Have a question about something you heard? Looking for a transcript? Want to suggest a topic or guest? Contact us via email or visit our website. Follow us: @‌PublicHealthPod on Bluesky @‌JohnsHopkinsSPH on Instagram @‌JohnsHopkinsSPH on Facebook @‌PublicHealthOnCall on YouTube Here's our RSS feed Note: These podcasts are a conversation between the participants, and do not represent the position of Johns Hopkins University.

In this episode of Walk and Roll Live, we continue our exploration of invisible disabilities with guest Therese Adjivon-Theodore, who shares her journey living with Sickle Cell Anemia. From her earliest memories to the challenges she faces each day, Therese opens up about the physical, emotional, and social realities of a condition that often goes unseen. She also educates us on what Sickle Cell is, how it's managed, and what she wishes people understood about invisible disabilities. This heartfelt conversation shines a light on resilience, advocacy, and the importance of empathy. Walk and Roll Live 

Kalangala's geographic isolation makes things hard when blood is needed. It has to be ferried from Masaka, over water, through weather, and delays. But there's a renewed effort to change this.

Vaso-occlusive pain episodes are the most common reason children and adolescents with sickle cell disease present to the Emergency Department. Prompt, protocol-driven management is essential starting with early administration of IV opioids, reassessment at 15–30 minute intervals, and judicious hydration. Understanding the patient's typical pain pattern, opioid history, and psychosocial context can guide more effective […]

In this episode, host Jonathan Sackier is joined by Steven Okoli, Honorary Senior Clinical Lecturer at Imperial College London. From leading the UK's first adult stem cell transplant trial for sickle cell disease to driving innovation in AI-guided transfusion strategies, Okoli shares how clinical research, patient advocacy, and equity-driven care are reshaping the landscape of haemoglobinopathies in the UK and beyond.  Timestamps  00:00: Introduction  01:58: Quickfire round  09:09: Pioneering adult stem cell transplant in sickle cell  11:41: Combining AI and genetics for blood transfusion  13:58: Systemic disparities in sickle cell  20:58: Education and advocacy  23:30: Non-cancerous blood disorders  25:18: What's next in sickle cell?  27:27: Okoli's three wishes for healthcare  

Guest: Yogindra Persuad For decades, hydroxyurea has been the cornerstone therapy for sickle cell disease, but new disease-modifying therapies, curative strategies, and gene therapies are expanding options for patients. While these advancing approaches come with some risks, they can help offer symptom relief, reduce complications, and give patients more choices when it comes to managing their sickle cell disease. Hear Dr. Yogindra Persuad, a physician in the Department of Hematology at St. Jude Children's Research Hospital in Memphis, Tennessee, walk through the history of sickle cell disease treatment and discuss the benefits and risks of these developing therapies.

Guest: Yogindra Persuad For decades, hydroxyurea has been the cornerstone therapy for sickle cell disease, but new disease-modifying therapies, curative strategies, and gene therapies are expanding options for patients. While these advancing approaches come with some risks, they can help offer symptom relief, reduce complications, and give patients more choices when it comes to managing their sickle cell disease. Hear Dr. Yogindra Persuad, a physician in the Department of Hematology at St. Jude Children's Research Hospital in Memphis, Tennessee, walk through the history of sickle cell disease treatment and discuss the benefits and risks of these developing therapies.

In this powerful and moving conversation, we sit down with the ever-so-joyful Simply Sayo to discuss her personal experience living with sickle cell and how she has used her sister's story to raise awareness and spread joy. We talk about the realities of navigating chronic illness, the power of storytelling, and what true advocacy looks like within the Black community. This episode is a reminder of how strength, softness, and sisterhood can coexist—even in the face of pain.

In this episode of RCP Medicine Podcast, Dr Dale Seviar a Consultant Haematologist at Guy's and St Thomas' NHS Foundation Trust is welcomed by Dr Rebecca Kuruvilla, a previous RCP clinical education fellow and an ST7 Clinical Pharmacology and GIM registrar. Together, they discuss the management of sickle cell disease using a hypothetical case study, providing valuable insights and practical tips for medical professionals. Sickle cell disease is one of the fastest growing genetic conditions that there is, and it's likely that many of you will be exposed to people living with sickle cell. This episode aims to provide a comprehensive understanding of the condition, acute complications and management strategies.Resources Sickle Cell Disease - RCEMLearningRCEM_BPG_Sickle-Cell-Disease_v3.2.pdfInherited anaemias: sickle cell and thalassaemia - ScienceDirectOverview | Sickle cell disease: managing acute painful episodes in hospital | Guidance | NICEManagement of Acute Chest Syndrome in Sickle Cell DiseaseHemolytic transfusion reactions in sickle cell disease: underappreciated and pRCP Links Education and learning Events Membership Improving care Policy and campaigns RCP Social Media Instagram LinkedIn Facebook X Bluesky Music: Episode 50 onward - Bensound.com Episodes 1 - 49 'Impressive Deals' - Nicolai Heidlas

This week hosts Tiffany Cross, Angela Rye, and Andrew Gillum grapple with the proposed federal budget. Trump’s “big beautiful” budget is poised to be the largest cut to the social safety net in generations, and the largest transfer of wealth from low income to high income Americans EVER. Millions of Americans will lose health coverage and access to SNAP or food stamps. Countless other federal programs are being cut while the budget for the military and mass deportation adds hundreds of billions of dollars, and tax cuts for the wealthiest Americans are extended. How do we respond? Funding for research, especially medical research into diseases like Sickle Cell that disproportionately affect the Black community, has already faced cuts. The Trump administration continues to end programs that could be construed as “DEI,” which in effect is any program aimed at helping the Black community. The verdict is in for Sean “Diddy” Combs and it seems like the prosecution over reached. He was accused of and charged with some heinous acts for sure. But anytime a prominent Black man is attacked by the justice system, it can bring up some complicated emotions. And of course we’ll hear from you! If you’d like to submit a question, check out our tutorial video: http://www.instagram.com/reel/C5j_oBXLIg0/ and send to @nativelandpod. We are 488 days away from the midterm elections. Welcome home y’all! —--------- We want to hear from you! Send us a video @nativelandpod and we may feature you on the podcast. Instagram X/Twitter Facebook NativeLandPod.com Watch full episodes of Native Land Pod here on YouTube. Native Land Pod is brought to you by Reasoned Choice Media. Thank you to the Native Land Pod team: Angela Rye as host, executive producer and cofounder of Reasoned Choice Media; Tiffany Cross as host and producer, Andrew Gillum as host and producer, and Lauren Hansen as executive producer; Loren Mychael is our research producer, and Nikolas Harter is our editor and producer. Special thanks to Chris Morrow and Lenard McKelvey, co-founders of Reasoned Choice Media. Theme music created by Daniel Laurent.See omnystudio.com/listener for privacy information.

In this week's episode we'll learn more about a novel mouse model that recapitulates many of the properties of human sickle cell SC disease; results from the induction phase of the risk-adapted MIDAS trial of isatuximab, carfilzomib, lenalidomide, and dexamethasone in newly diagnosed, transplant-eligible multiple myeloma; and a link between splicing factor mutations and competitive fitness in myelodysplastic syndrome stem cells.Featured articles:A novel mouse model of hemoglobin SC disease reveals mechanisms underlying beneficial effects of hydroxyureaIsatuximab, carfilzomib, lenalidomide, and dexamethasone induction in newly diagnosed myeloma: analysis of the MIDAS trialCell-autonomous dysregulation of interferon signaling drives clonal expansion of SRSF2-mutant MDS stem/progenitor cells

Demeatrice Nance has been advocating for her Sickle Cell Warrior, Makenzie, since she was diagnosed after birth in October of 2003. Since then she's become a champion for blood donation and a hero to sickle cell patients everywhere. 

Living with sickle cell disease in Nigeria often means enduring pain, managing uncertainty, and surviving with little support.Many people don't even know they carry the sickle cell gene until it's too late.Others grow up with the condition but have no access to proper care, accurate information, or emotional guidance.In this episode of Nigeria Daily, we speak to individuals directly affected by sickle cell and hear from medical professionals on how it can be managed and treated — and the urgent reforms needed in Nigeria's health system.

In this powerful episode of It Happened To Me, co-hosts Cathy Gildenhorn and Beth Glassman are joined by two fierce patient advocates and changemakers in the sickle cell disease community: Wunmi Bakare and Dima Hendricks. Both women are living with sickle cell disease and have transformed their lived experiences into platforms for storytelling, education, and change.   They are also the co-hosts of #ThroughTheGenes, a podcast that launched last year on World Sickle Cell Day (June 19, 2024). The show explores gene therapy and other innovative treatments for sickle cell disease while centering patient voices. With a second season debuting again on June 19th (exactly a month from today!), Wunmi and Dima continue to bring much-needed visibility to a condition that is often misunderstood and underfunded. And they will be joined by a new dynamic host, Christelle Salomon!   Topics Discussed: What is sickle cell disease and how it impacts daily life The emotional and physical toll of living with a chronic, invisible illness Medical gaslighting and how to advocate for yourself Finding community and realizing you're not alone Blending identity, advocacy, and creativity in the public eye Insights into gene therapy, including CRISPR technology and treatment considerations Health equity and why access to care must be a priority in the sickle cell space The power of patient-centered storytelling through #ThroughTheGenes podcast   During the episode Beth referenced a previous episode with someone who has pancreatic cancer, you can listen to Leslie Waldman's full interview on Episode 25 here.    Catch up with all of season 1 of #ThroughTheGenes podcast right now, before season 2 launches on World Sickle Cell Day on June 19th, 2025.    Both podcasts, It Happened To Me and #ThroughTheGenes are part of Gene Pool Media, the science podcast network. Be sure to check out all these science shows, many of which discuss medical challenges.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Sickle cell disease is painful, costly and now possibly- curable. A new treatment reprograms a person's own blood cells to fight the disease. We break down how it works and introduce you to a woman ready for relief.

On this episode of Cheat Codes, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, is joined by sickle cell advocates Teonna Woolford, Cassandra Trimnell, and Rae Blaylark discuss the challenges and rewards of sickle cell advocacy. They delve into personal journeys, the nuances of advocacy, and the importance of self-care. The conversation highlights the power of community, the significance of setting boundaries, and the need for therapeutic support. The advocates also reflect on the impact of their work and offer advice for the next generation of sickle cell advocates.   SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease.  Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.     Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.   TRANSPARENCY STATEMENT  Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guests featured in this episode have been compensated for their time.  

In this week's episode we'll learn more about how phosphoseryl-tRNA kinase inhibition promotes cell death in acute myeloid leukemia, or AML; APOE gene variants and their association with post-hematopoietic stem cell transplant outcomes in AML; and pathways by which chronic inflammation and oxidative stress may lead to cardiomyopathy in patients with sickle cell disease.Featured Articles:PSTK inhibition activates cGAS-STING, precipitating ferroptotic cell death in leukemic stem cells Common Hereditary Variants of the APOE Gene and Posttransplant Outcome in Acute Myeloid Leukemia 17R-Resolvin D1 Protects Against Sickle Cell Related Inflammatory Cardiomyopathy in Humanized Mice 

The Steve Harvey Morning Show for Wednesday, April 16th, 2025: Steve gives Junior a pep talk as he prepares to speak before the Texas State Senate on new Sickle Cell legislation. Michelle Obama addresses speculation that she and the former President are getting a divorce. A$AP Rocky says he knew Rihanna was in the courtroom for his acquittal...find out how. The crew discuss classic TV shows and singing groups they would bring back. There's another crazy Strawberry Letter, Ask The CLO, Would You Rather, & more!Support the show: https://www.steveharveyfm.com/See omnystudio.com/listener for privacy information.

On this episode, Dr. Z and Dr. C. Callahan interview Dr. Isaac Odame, a leading figure in the field of sickle cell disease. Dr. Odame shares his life story, beginning in Ghana, his medical training in the UK, and his global contributions to sickle cell research, including involvement with the Global Sickle Cell Disease Network. The discussion covers his work in various countries, the challenges, and successes in treating sickle cell disease, and his family's influence on his career.    SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease.  Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.     TRANSPARENCY STATEMENT  Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.   Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.  

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Drs. Z and C welcome Dr. Wally Smith, a leading figure in sickle cell research from Virginia Commonwealth University, to discuss crucial issues affecting adults with sickle cell disease. They explore the neglect of adult patients, the need for dedicated centers, and the value of community health workers. Dr. Smith emphasizes the importance of holistic healthcare solutions, state-level policy initiatives, and community support to improve quality of life and outcomes for sickle cell patients.    SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease.  Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.     TRANSPARENCY STATEMENT  Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.   Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.  

Peter is of Greek descent and shows resilience and strength in facing the challenges of living with Beta Thalassaemia. Peter is passionate about supporting and advocating for others who share his condition. As an Early Childhood teacher, Peter uses his knowledge and personal experiences to assist families navigating the complexities of the health system and accessing vital services. He is a dedicated advocate for patients and the community, providing guidance and support to those in need. Peter enjoys participating in awareness days to educate the community around what it's like living with thalassaemia and to increase awareness of genetic blood conditions. Peter serves as a consumer advisor for the Monash Health Blood Committee, helping to shape policies and initiatives that benefit individuals with blood conditions. Despite some health challenges he faces just like many others living with the condition, Peter remains positive and dedicated to making a difference in the lives of those around him. Sally is an enthusiastic Health Promotions Officer at Thalassaemia and Sickle Cell Australia. She takes great pride in her work as she educates the community about genetic blood conditions, carrier testing and blood donations. She also loves connecting with people, supporting those affected by these conditions. Sally is dedicated to creating a positive impact in the lives of people across Australia. When she's not working, Sally enjoys camping, hiking and being surrounded by nature. She also loves time with family and reading a good book at home Peter Verveniotis, who has been living with thalassemia major for nearly 50 years, and Sally Barton, a health promotions officer at Thalassemia and Sickle Cell Australia. The discussion covers various aspects of thalassemia, including diagnosis, treatment, community attitudes, and future perspectives. Key points include: Peter's experience with regular blood transfusions and the physiological challenges of thalassemia major The impact of diagnosis on family dynamics and community stigma Sally's role in educating high school and university students about thalassemia Advancements in treatment options, including chelation therapy and potential gene therapy The importance of coordinated, multidisciplinary care for thalassemia patients The role of community support in helping patients feel less isolated Proposals for future initiatives, including an international conference and journal editorials The episode provides valuable insights into living with thalassemia and the ongoing efforts to improve care and awareness for this rare genetic condition.

Gene therapy offers significant hope for treating sickle cell disease (SCD), a genetic disorder caused by a single mutation in the hemoglobin gene. Recent advancements have led to promising developments and FDA approvals, but challenges remain. In this podcast episode, gene therapy survivor, Jimi Olaghere, shares his journey and offers hope to others with his inspirational message and through his advocacy for patients in the sickle cell community.

Steve and Jim start with continuing their disagreement over concealed carry strategies. We then move on to discussing the attacks on Tesla vehicles and dealerships and Trump's comments regarding Tesla and domestic terrorism. Trump and courts and our Constitutional crisis. We also discuss the death of Federal Judge Jessica Aber; a potential cure for sickle cell anemia; RIP George Foreman and some NFL talk... Enjoy. @whiskeycongress on X and twitter

On this inspiring episode of Cheat Codes, Dr. Z and Dr. C talk with an extraordinary group of individuals who embarked on a monumental climb up Mount Kilimanjaro to raise awareness and funds for sickle cell disease. Led by Dr. Alan Anderson and featuring sickle cell warrior Jimi Olaghere the group of Patrick Hines, MD, PhD, Eva Gallagher, PhD, and Audra Boscoe, PhD shares personal stories of perseverance, determination, and the powerful symbolism of their climb. They discuss the challenges they faced, both mental and physical, and the life-changing impact of their journey. With over $2 million raised, the episode concludes with a hopeful message for the future of sickle cell diagnosis and treatment in Sub-Saharan Africa. Audra Boscoe and Eva Gallagher are employees of Agios Pharmaceuticals. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease.  Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.   Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. TRANSPARENCY STATEMENT  Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.  

Dr Chris answers more listener questions, including: How do sunflowers follow the sun? How does the body determine when you're passing wind or something more solid? Why are mosquitos attracted to some people more than others? Why are some people more intelligent than others? Why are humans the only species with advanced intelligence? How intelligent is an octopus? Like this podcast? Please help us by supporting the Naked Scientists

Dr Chris answers more listener questions, including: How do sunflowers follow the sun? How does the body determine when you're passing wind or something more solid? Why are mosquitos attracted to some people more than others? Why are some people more intelligent than others? Why are humans the only species with advanced intelligence? How intelligent is an octopus? Like this podcast? Please help us by supporting the Naked Scientists

In this powerful episode of Once Upon a Gene, I sit down with James Griffin, author of Breaking Silence: Living With Sickle Cell Anemia. Diagnosed at just two years old, James spent much of his life keeping his condition a secret, fearing how others would perceive him. He faced excruciating pain, hospitalizations, and the daily challenges of living with a chronic illness—all while navigating school, friendships, and a world that often didn't understand his struggles. Now, as an advocate and author, James is using his voice to raise awareness, empower others with sickle cell disease, and push for better care, research, and understanding. In this conversation, he shares what it was like growing up with sickle cell, the language he's learned to use in emergency rooms to be taken seriously, and how he found the courage to finally open up about his diagnosis. Whether you or a loved one are affected by sickle cell disease, or you simply want to hear an inspiring story about resilience and advocacy, this episode is for you.

Sickle cell disease affects approximately 100,000 Americans, with 1 in 365 Black or African American births impacted by this inherited blood disorder. This chronic condition causes immense pain and complications, significantly reducing life expectancy and quality of life for those affected. While treatments have improved over the years, there's growing interest in exploring new avenues to manage sickle cell disease more effectively. One promising area of research is the connection between sickle cell disease and gut health. Recent studies have revealed intriguing links between the gut microbiome and various aspects of sickle cell disease, including pain management and overall well-being. Understanding this relationship could potentially open up new therapeutic approaches and improve outcomes for patients. That's why we're so glad to chat on IG Live with Dr. Charlie Ware, a holistic health expert with expertise in gut health and sickle cell. During this Live, we're going to discuss symptoms of sickle cell disease, the role of genetics in sickle cell, how your gut plays a role in your health, and so much more. Learn more about Dr. Ware's services: https://www.drcharlieware.com/ Get tested for BPA, phthalates, parabens, and other hormone-disrupting chemicals with Million Marker's Detect & Detox Test Kit: https://www.millionmarker.com/

What makes sickle cell disease so challenging to manage? It's not just the pain — it's the complications, stigma, and the need for fast, effective care. In this episode, Morgan Taylor, RN helps us unpack the science behind sickle cell crisis and how nurses can address both the medical and emotional needs of their patients.Learn how to recognize early warning signs of severe complications like acute chest syndrome, balance efficacy and safety in treatment, and help patients prevent a sickle cell crisis. Morgan also shares five key insights that will give you the tools and confidence to provide the best care to your next sickle cell patient. Tune in to this can't-miss episode now!Topics discussed in this episode:Patient presentation and initial symptomsPathophysiology of sickle cell anemiaPain managementRole of fluids and oxygen therapyAdvanced treatments and managing severe complicationsSigns and symptoms of worst case scenarios like Acute Chest SyndromeImportance of advocacy and patient educationPsychosocial impacts of chronic illnessYou can learn more about Morgan here:https://www.linkedin.com/in/morgan-clark-taylor/Find out everything Archer Review has to offer here:https://www.linkedin.com/company/archerreview/Mentioned in this episode:Rapid Response Academy LinkWanna check out Rapid Response Academy: The Heart and Science of Caring for the Sick? click this link to learn more: https://www.rapidresponseandrescue.com/communityCONNECT

Got a story idea for Bloodworks 101? Send us a text message In February of 2024, since it was Black History Month, we took a hard look at Sickle Cell Disease, a devastating genetic blood disorder that predominantly impacts people of African descent. In this Bloodworks 101 Best of 2024 episode, producer Helen Pitlick told us that Sickle Cell disease is an unfortunate reality for many members of Black communities, and at Bloodworks, we'd like to make it history. Dr. Raymond Adili of Bloodworks Research Institute thinks this is possible.

In this episode, we dive into the inspiring story of Hanif Mouehla, a Harvard student and former sickle cell warrior. Hanif shares his journey of growing up with sickle cell disease, from the challenges he faced in his youth to the curative treatment that changed his life. Support this podcast: ⁠https://anchor.fm/thesicklecellpodcast/support⁠ --- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support

Welcome back to Seasoned Sessions! This week, we talk about the Daily Mail linking Harry and Meghan to the Archbishop of Canterbury abuse scandal, a man with sickle cell who died in police custody, and more. Get in touch with us at @seasonedsessionspod, @adaenechi, and @its_hanifahh and leave any questions for Honesty Hour on this form.

For so long, so many of our Pivot followers have asked when we will interview each other and share our own takes on certain personal questions we often wonder about but never have time to dig in and find out ... .so we are finally doing it! That's right, on this episode of the Pivot, in partnership with Fanatics, Ryan, Fred, and Channing switch it up and dive into one another's stories by interviewing each other, leaning into their own vulnerabilities while learning the how and why of who they are today and where they see themselves in the future.  The conversation kicks off with football, talking about the early youth years to how each got their big NFL break to the things they would have done differently to any regrets and how their respective teams shaped their legacy. Ryan opens up about his undrafted journey to battling Sickle Cell to winning a Super Bowl, and how those experiences furthered his "underdog mentality"—something that still fuels him today. Fred is honest about missing the game and wishing he could still play while Channing doesn't miss it at all. Channing finds it ironic that Fred feels a void because in the history books, Fred is one of the best to ever play his position. But despite Fred's legendary career, he opens up on his own struggles, through dealing with the "Fragile Freddy" stages to not yet making the Hall of Fame and the emotional toll public perception took on him. Channing gets real about the balance (or lack of) between football and everything else he did away from the game…revealing some regrets about the choices he made and how it affected his career.  Understanding that life always moves at a fast pace, doesn't mean we shouldn't stop and realize the reach of our choices is far beyond the field and what we contribute each day is how we will be remembered long after we are gone.  On the eve of Ryan's 45th birthday, he reflects on where he is today and the mission he tries to live out in all his life moments not wanting his Super Bowl win to be the single accomplishment everyone references with more focus on the impact he makes each day and how he's seen for his contributions as well as how he's viewed by the people closest to him. Ryan shares a personal story of a childhood friend recently passing away and how age is creeping up on us and that when it's all said and done, he doesn't want to be defined by his past or a single accomplishment but by who is today and his current mission.  Posing the same question to the guys, Ryan asks what the future holds for each of his co-hosts. Channing shares his vision about making the Crowder name mean something, both for his family and business, while Fred's focus is on his kids and teaching them to be strong minded and live with integrity. The depth of vulnerability and authenticity displayed in the voice of Ryan, Channing and Fred is something that will resonate with all of us as we continue to Pivot through our own lives and journeys. Make progress towards your financial goals with Chime. Visit https://www.chime.com/PIVOT Learn more about your ad choices. Visit megaphone.fm/adchoices

This episode is brought to listeners by NHS Blood & Transplant!Join this channel to get access to perks:https://www.youtube.com/channel/UCOIOo7ybnNFNdwjSCgYDtOw/joinPO Box 5038 HORNCHURCH RM12 9JX Hosted on Acast. See acast.com/privacy for more information.

Today in Closing Remarks, Big Dog and the crew talk about Sickle Cell awareness and it gets loud.See omnystudio.com/listener for privacy information.

Former President Donald Trump tried to overturn the election results and slander election workers in 2020. Less than two months before this year's election, officials are preparing for new conspiracy theories. Online influencers are trying to find evidence of debunked events in Springfield, Ohio, and many people with sickle cell disease are slow to sign up for new genetic treatments.Want more comprehensive analysis of the most important news of the day, plus a little fun? Subscribe to the Up First newsletter.Today's episode of Up First was edited by Ben Swasey, Brett Neely, Scott Hensley, HJ Mai and Ally Schweitzer. It was produced by Iman Maani, Ziad Buchh, Nia Dumas and Mansee Khurana. We get engineering support from Arthur Laurent, and our technical director is Zac Coleman.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Two-time Emmy and Three-time NAACP Image Award-winning television Executive Producer Rushion McDonald interviewed Kier "Junior" Spates. Co-Host of Steve Harvey Morning Show and founded Kier's Hope to provide underprivileged individuals who suffer from Sickle Cell Disease to ensure they receive the medical, physical, and emotional attention they deserve. Suffering from sickle cell disease in silence is not uncommon in the African-American Community as there is a lack of knowledge of the disease. So, he created the Kier's Hope Foundation. The annual Kier's Hope 5K Fun Run and Walk and Junior Claus is an opportunity for families and those with sickle cell disease to gather and learn more about new treatments, spread awareness, and increase community engagement. Sickle Cell Disease is misunderstood as being contagious, an automatic death sentence, and that people with SCD can't do what "normal" people do!  Kier is changing that narrative. #AMI #BEST #SHMS  #STRAW  See omnystudio.com/listener for privacy information.

Two-time Emmy and Three-time NAACP Image Award-winning television Executive Producer Rushion McDonald interviewed Kier "Junior" Spates. Co-Host of Steve Harvey Morning Show and founded Kier's Hope to provide underprivileged individuals who suffer from Sickle Cell Disease to ensure they receive the medical, physical, and emotional attention they deserve. Suffering from sickle cell disease in silence is not uncommon in the African-American Community as there is a lack of knowledge of the disease. So, he created the Kier's Hope Foundation. The annual Kier's Hope 5K Fun Run and Walk and Junior Claus is an opportunity for families and those with sickle cell disease to gather and learn more about new treatments, spread awareness, and increase community engagement. Sickle Cell Disease is misunderstood as being contagious, an automatic death sentence, and that people with SCD can't do what "normal" people do!  Kier is changing that narrative. #AMI #BEST #SHMS  #STRAW  Support the show: https://www.steveharveyfm.com/See omnystudio.com/listener for privacy information.

Two-time Emmy and Three-time NAACP Image Award-winning television Executive Producer Rushion McDonald interviewed Kier "Junior" Spates. Co-Host of Steve Harvey Morning Show and founded Kier's Hope to provide underprivileged individuals who suffer from Sickle Cell Disease to ensure they receive the medical, physical, and emotional attention they deserve. Suffering from sickle cell disease in silence is not uncommon in the African-American Community as there is a lack of knowledge of the disease. So, he created the Kier's Hope Foundation. The annual Kier's Hope 5K Fun Run and Walk and Junior Claus is an opportunity for families and those with sickle cell disease to gather and learn more about new treatments, spread awareness, and increase community engagement. Sickle Cell Disease is misunderstood as being contagious, an automatic death sentence, and that people with SCD can't do what "normal" people do!  Kier is changing that narrative. #AMI #BEST #SHMS  #STRAW  See omnystudio.com/listener for privacy information.