Podcasts about Thalassemia

ప్రతి 15 రోజులకోసారి రక్తం ఎక్కించుకోవాల్సిన పరిస్థితి...ఒక కుటుంబం అనుభవించిన బాధ... మరెవ్వరికీ రాకూడదనే సంకల్పం...ఆ సంకల్పమే మినుమ్ రెడ్డి సాహితి గారిని తలసేమియాపై అందరికీ అవగాహన కల్పించేలా చేసింది. అంతేకాకుండా ప్రజారోగ్యం, గ్రామీణాభివృద్ధి, పర్యావరణ పరిరక్షణ వంటి ఎన్నో రంగాల్లో సేవలందిస్తూ, Real Impact Innovations ద్వారా సామాజిక మార్పు కోసం కృషి చేస్తున్నారు.అసలు తలసేమియా అంటే ఏమిటి? ఈ వ్యాధిని పూర్తిగా తగ్గించడం సాధ్యమేనా? పెళ్లికి ముందు లేదా గర్భధారణకు ముందు రక్త పరీక్ష చేసుకోవడం ఎందుకు అంత ముఖ్యమైంది? రక్తదానం ఎందుకు ప్రాణదానంతో సమానం? ఇలాంటి ఎన్నో విషయాలను ఈ పాడ్కాస్ట్ లో మనతో పంచుకున్నారు.South India's CSR Summit వారి భాగస్వామ్యంతో TALRadio నిర్వహిస్తున్న ఈ "Charcha With Real Leaders" కార్యక్రమంలో...Real Impact Innovations ఫౌండర్ మినుమ్ రెడ్డి సాహితి గారి ప్రయాణం... వారి మాటల్లోనే మీకోసం!Having to undergo a blood transfusion every 15 days...The pain and challenges faced by one family became the driving force behind a mission to ensure that no one else has to go through the same struggle.That mission inspired Minum Reddy Sahithi to create awareness about Thalassemia and educate people on the importance of prevention and early screening. Beyond this cause, she has been actively working towards social impact through Real Impact Innovations, contributing to areas such as public health, rural development, and environmental sustainability.What exactly is Thalassemia? Is it possible to prevent this condition? Why are blood tests before marriage or pregnancy so important? And why is blood donation often described as a gift of life?In this podcast, she shares valuable insights on these important questions and much more.In association with South India's CSR Summit, TALRadio presents another episode of "Charcha With Real Leaders" featuring the inspiring journey of Minum Reddy Sahithi, Founder of Real Impact Innovations.Watch now and hear her story in her own words.Guest: Minum Reddy Sahithi Host: Vinil Reddy#talkradio #charchawithrealleaders #SahithiMinumReddy #ThalassemiaAwareness #blooddonation #HealthAwarenessCampaign #realimpactinnovations #touchalifefoundation 

This episode of Thal Pals: The Alpha Beta Revolution brings together leading advocates from around the world to explore how community, culture, and connection strengthen the global thalassemia movement. NinaMaria sits down with Craig Butler, Maria Hadjidemetriou, and Dina Steagall to discuss the power of storytelling, cross-cultural support, and the importance of meeting patients where they are. Together, they share personal experiences and real-world examples of how advocacy can transform care, expand access, and empower patients to live fuller lives. This uplifting conversation highlights the many ways individuals and organizations can build community and create meaningful change.   For more information about Cooley's Anemia Foundation, visit thalassemia.org.   For more information ABRASTA, visit ABRASTA.org.br.   For more information about Thalassemia International Federation (TIF), visit thalassaemia.org.cy   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.  

On this episode of Thal Pals: The Alpha Beta Revolution, Madina Margeson shares her powerful journey living with beta thalassemia, from being told she was "lucky" as a child to discovering the long-term impact of years without proper care. After uncovering serious complications in adulthood, Madina took control of her health, advocating for answers, seeking expert care, and ultimately transforming her approach to treatment. She opens up about fear, stigma, and the emotional toll of late diagnosis, while highlighting the life-changing importance of community and education. Her story is a compelling reminder that "stable" isn't always enough, and that pushing for better care can change everything. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.  TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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.

In this week's episode, Blood editor Dr. Laura Michaelis interviews Dr. Alexis Thompson, former ASH president, on her latest article published in Blood. Dr. Thompson discusses "Long-term efficacy and safety results of betibeglogene autotemcel gene therapy for transfusion-dependent β-thalassemia." She explains transfusion-dependent β-thalassemia (TDT) requires rigorous, lifelong transfusion therapy and iron chelation to manage iron overload. Dr. Kwiatkowski and colleagues discuss the long-term efficacy and safety of this gene therapy in 63 patients with TDT, documenting sustained transfusion independence for up to 10 years and a safety profile consistent with that of myeloablative autologous transplantation.

In Part 2 of our Stages of Life series, NinaMaria and Dr. Kevin Kuo welcome back Dr. Scott Peslak for a deep dive into the unique considerations thalassemia patients face in their 20s, 30s, and beyond. The conversation covers fertility and pregnancy planning, navigating cellular therapies, and balancing parenthood with thalassemia care. Dr. Peslak also discusses aging with thalassemia, from fatigue and bone health to cardiac and endocrine monitoring, emphasizing how proactive care and the right medical team can support long, thriving lives. This episode offers clarity, encouragement, and practical guidance for anyone moving through adulthood with thalassemia.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.  

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

This content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME/NCPD/AAPA information, and to apply for credit, please visit us at PeerView.com/WYB865. CME/NCPD/AAPA credit will be available until April 12, 2027.Transformative Care for Hemoglobinopathies: Guidance on the Gene Therapy Experience in SCD & Thalassemia In support of improving patient care, PVI, PeerView Institute for Medical Education, is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.SupportThis activity is supported by educational grants from Beam Therapeutics and Vertex Pharmaceuticals.Disclosure information is available at the beginning of the video presentation.

Being an adult with thalassemia comes with unique challenges—and victories—at every stage of life. On this episode of Thal Pals: The Alpha Beta Revolution, patient advocate NinaMaria Badalamenti and co-host Dr. Kevin Kuo sit down with Dr. Scott Peslak, physician scientist and director of the Adult Comprehensive Thalassemia Program at UPenn. From navigating the tricky transition from pediatric to adult care, to managing transfusions, iron chelation, and long-term health in your 30s, 40s, and beyond, Dr. Peslak shares insights for thriving at every age. He also highlights what life looks like for patients in their 50s, 60s, and beyond—and why comprehensive adult care and new research initiatives are critical for the future of the thalassemia community. Whether you're newly navigating adult care, managing chronic treatment, or supporting a loved one, this episode gives real-world guidance, hope, and strategies to help you live well with thalassemia.

In this podcast, Baba delves into his expertise in hematology, sharing what inspired his journey into this field of research. He also discusses the Academy for Sickle Cell and Thalassaemia (ASCAT) Conference, which he founded to unite experts and professionals working to tackle hematological disorders like sickle cell disease and thalassemia.

On this episode of Thal Pals: The Alpha Beta Revolution, NinaMaria Badalamenti and Dr. Kevin Kuo sit down with two giants in the thalassemia field, Dr. Sujit Sheth and Dr. Nica Cappellini, to unpack findings from a new global health literacy survey. The conversation explores why patient understanding of hemoglobin levels, monitoring, and treatment goals remains so critical, whether someone lives with transfusion-dependent or non-transfusion-dependent thalassemia. Through personal stories and decades of expertise, the guests illuminate how far care has come, where gaps remain, and what true collaboration between patients and clinicians can look like. It's an insightful and empowering discussion for anyone impacted by thalassemia.   To read A White Paper on Global Health Literacy in Thalassemia, click here.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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.

In part two of their myth-busting series, NinaMaria Badalamenti and Dr. Kevin Kuo continue to break down common misconceptions about thalassemia. They discuss the risks and complications for both alpha and beta thalassemia, the importance of individualized care, and why physical activity is encouraged for people living with the condition. The episode also covers genetic inheritance, the realities of transfusion schedules, and the need for patients to advocate for themselves. Tune in for practical insights and empowering advice for the thalassemia community!   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.

First, we talk to The Indian Express' Shubham Tigga about a case that has emerged in Jharkhand, where five children suffering from Thalassemia went for their regular blood transfusion and came back HIV positive. He talks about the state government's reaction, the hospital's response and the investigation that is happening. Next, we talk to The Indian Express' Pavneet Singh Chadha about the concerns around tourism in Goa. Since a social media controversy broke out last year about Goa's tourism infrastructure, the tourism stakeholders of the state have been concerned about the footfall during its peak tourist season. (13:40)Lastly, we talk about Chinese President Xi Jinping meeting US President Donald Trump on the sidelines of the Asia Pacific Economic Cooperation Summit in South Korea. (26:35)Hosted by Niharika NandaProduced by Niharika Nanda, Ichha Sharma, and Shashank BhargavaEdited and mixed by Suresh Pawar

In this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalamenti and Dr. Kevin Kuo tackle common myths and misconceptions about thalassemia. They discuss the importance of communicating symptoms like fatigue to healthcare providers, the complex relationship between hemoglobin levels and how patients feel, and the realities of iron overload for both transfusion-dependent and non-transfusion-dependent individuals. The episode also explains why ferritin isn't the only important measure of iron overload and uses memorable analogies to make these concepts clear. Tune in for part one of this myth-busting series and get ready for more insights in the next episode! SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. TRANSPARENCY STATEMENT Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.

Hematologist Dr. Arielle Langer joins host NinaMaria Badalamenti to unpack fertility, pregnancy, and family planning for people with thalassemia. From timing and iron control to genetic counseling, birth control options, and postpartum care, this episode offers practical, clear guidance for every stage of the journey.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.

Have you ever wondered how your last name connects to your cultural identity? In this episode, hosts John Viola and Patrick O'Boyle, alongside co-host Dr. Marcella Martin, dive into the deep ties between Italian heritage and personal identity. The conversation takes a powerful turn with guests Janice Cenzoprano and Ralph Colasanti from the Cooley's Anemia Foundation, who guide us through the genetic story of thalassemia. Together, we trace its Mediterranean roots, its links to malaria zones, and even its surprising historical connections to explorers like Marco Polo. Through a moving firsthand account, we hear what it was like to grow up with thalassemia in its early days of treatment — from demanding regimens to the life-changing arrival of oral chelators. Along the way, we highlight the often-unsung community heroes: organizations like Sons of Italy and UNICO, whose unwavering advocacy and support have been vital in this journey. We also revisit the grassroots philanthropy that helped pave the way for today's progress, celebrating figures like Joe Polari and Pat Acasella whose tireless efforts fueled awareness and research. Patient advocacy and breakthroughs in genetic therapy point toward a hopeful future, where advanced treatments could transform patient care. Join us for an episode rich with history, resilience, and community spirit — a testament to how cultural identity and collective action can shape both personal journeys and medical advancement.   THEIR SOCIALS Instagram: @cooleysanemia TikTok: tiktok.com/cooleysanemia Facebook: https://www.facebook.com/CooleysAnemiaFoundation X: @cooleysanemia Threads: @cooleysanemia LinkedIn: Cooley's Anemia Foundation   THEIR WEBSITE: Thalassmia.org NOTES FROM THE FOUNDATION: Our Thalassemia Care Walk Fundraiser is ongoing throughout the year. Check bit.ly/CAFCareWalk25 for upcoming walks in your city or simply to donate and help us find a universal cure for all patients. Care Walk T-shirts are available at bit.ly/CAFCareWalk25 with registration!

In this powerful Arabic-language episode, Dr. Sherif Badawy shares his journey from Egypt to the U.S., his lifelong passion for thalassemia care, and the silent weight of stigma families often carry alone. From gene therapies to community education, this one's about more than medicine—it's about connection. A must-listen for anyone impacted by thalassemia or passionate about rare disease advocacy. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.  TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.  

In a special co-branded episode between Oncology On theGo hosted by CancerNetwork® and the American Society for Transplantation and Cellular Therapy (ASTCT)'s program ASTCT Talks, Nora M. Gibson, MD, MSCE, and Taha Al-Juhaishi, MD, spoke about real-world applications of betibeglogene autotemcel (beti-cel; Zynteglo) as a treatment for patients with beta (β)-thalassemia.They spoke in the context of a study that Gibson presented at the 2025 Tandem Meetings, which evaluated patients who received commercial beti-cel in a single-center cohort following the agent's FDA approval in August 2022. ¹ ²Nora is a fourth-year fellow in bone marrow transplant andcellular therapy at the Children's Hospital of Philadelphia (CHOP), with a background in clinical research and epidemiology. Al-Juhaishi is the Associate Director of the Hematopoietic Stem Cell Transplantation and Cell TherapyProgram at Oklahoma University Health Stephenson Cancer Center and an assistant professor of Medicine at the University of Oklahoma College of Medicine.Findings from Gibson's study revealed that among 10 patients who underwent stem cell collection at CHOP from 2022 to 2024, beti-cel yielded consistent red blood cell transfusion independence, with investigators notingprolonged platelet engraftment time and high platelet transfusion requirements. Beyond these findings, the conversation focused on how beti-cel compares withother currently available gene therapies for patients with hemoglobin disorders as well as non-curative therapies like allogeneic stem cell transplantation. Gibson and Al-Juhaishi also discussed strategies for mitigating occlusive disease and other potential toxicities associated with beti-cel.“It's a really exciting time to be working in this fieldwhere we finally have really good options for these patients. From our experience and from clinical trials, beti-cel and likely exagamglogene autotemcel [Casgevy]...are very effective, curative therapies for thalassemia in the real-world setting, and we've seen very similar results in sickle celldisease,” said Gibson. “These therapies have been really life-changing for our patients, and they've had a huge reduction in their symptoms and a huge reduction in their burden of health care that's required.”References1.     Gibson NM, Friedman DF, Elgarten CW, et al. Post-approval, real-world experience with betibeglogene autotemcel for transfusion-dependent betathalassemia. Transplantation and Cellular Therapy. 2025;31(2):S254. doi:10.1016/j.jtct.2025.01.386.2.     FDA approves first cell-based gene therapy totreat adult and pediatric patients with beta-thalassemia who require regular blood transfusions. News Release. FDA. August 17, 2022. Accessed April 21, 2025.https://tinyurl.com/3vrkk8kz

In a special co-branded episode between Oncology On the Go hosted by CancerNetwork® and the American Society for Transplantation and Cellular Therapy (ASTCT)'s program ASTCT Talks, Nora M. Gibson, MD, MSCE, and Taha Al-Juhaishi, MD, spoke about real-world applications of betibeglogene autotemcel (beti-cel; Zynteglo) as a treatment for patients with beta (β)-thalassemia. They spoke in the context of a study that Gibson presented at the 2025 Tandem Meetings, which evaluated patients who received commercial beti-cel in a single-center cohort following the agent's FDA approval in August 2022. Nora is a fourth-year fellow in bone marrow transplant and cellular therapy at the Children's Hospital of Philadelphia (CHOP), with a background in clinical research and epidemiology. Al-Juhaishi is the Associate Director of the Hematopoietic Stem Cell Transplantation and Cell Therapy Program at Oklahoma University Health Stephenson Cancer Center and an assistant professor of Medicine at the University of Oklahoma College of Medicine. Findings from Gibson's study revealed that among 10 patients who underwent stem cell collection at CHOP from 2022 to 2024, beti-cel yielded consistent red blood cell transfusion independence, with investigators noting prolonged platelet engraftment time and high platelet transfusion requirements. Beyond these findings, the conversation focused on how beti-cel compares with other currently available gene therapies for patients with hemoglobin disorders as well as non-curative therapies like allogeneic stem cell transplantation. Gibson and Al-Juhaishi also discussed strategies for mitigating occlusive disease and other potential toxicities associated with beti-cel. “It's a really exciting time to be working in this field where we finally have really good options for these patients. From our experience and from clinical trials, beti-cel and likely exagamglogene autotemcel [Casgevy]...are very effective, curative therapies for thalassemia in the real-world setting, and we've seen very similar results in sickle cell disease,” said Gibson. “These therapies have been really life-changing for our patients, and they've had a huge reduction in their symptoms and a huge reduction in their burden of health care that's required.” References 1. Gibson NM, Friedman DF, Elgarten CW, et al. Post-approval, real-world experience with betibeglogene autotemcel for transfusion-dependent beta thalassemia. Transplantation and Cellular Therapy. 2025;31(2):S254. doi:10.1016/j.jtct.2025.01.386. 2. FDA approves first cell-based gene therapy to treat adult and pediatric patients with beta-thalassemia who require regular blood transfusions. News Release. FDA. August 17, 2022. Accessed April 21, 2025. https://tinyurl.com/3vrkk8kz

On this episode of Thal Pals: The Alpha Beta Revolution, patient advocate NinaMaria discusses the cultural stigmas surrounding thalassemia with three guests, Ralph Colassanti, Radeka Sao, and Erik Phaykeo. Each shares their personal experiences with the condition and the cultural barriers they have faced and overcome. The conversation highlights the importance of community, connection, and empowerment among Thal patients, aiming to break down stigmas and encourage others to share their stories.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.  

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.

On this episode of Thal Pals, host NinaMaria talks with Maria Saradpan about her experiences as a caregiver to her daughter Camila, who has thalassemia. Maria shares her journey from initial fear and isolation to finding a supportive community and growing relationships with fellow caregivers and patients. The importance of a strong caregiver network, blood donations, and positive experiences at the hospital are highlighted. The episode also features Camila and her sister Mikayla discussing their unique bond and experiences with thalassemia.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.  

In this week's podcast, a potential new therapeutic target in beta-thalassemia. The E3 ubiquitin ligase AMBRA1 promotes autophagic clearance of free alpha-globin. Researchers describe mutations in the AMBRA1 gene that impair this clearance, exacerbating ineffective erythropoiesis and disease severity. After that: targeting MYD88 mutations. Lasalocid-A is a compound that selectively binds to the MYD88 L265P mutant protein, which is found in a range of B-cell lymphomas. New research shows its potential to inhibit tumor growth, overcome ibrutinib resistance, and synergize with venetoclax. Finally: air pollution is linked to an increased risk of venous thromboembolism in a prospective, community-based cohort study. The findings highlight the harms of pollution, and support the case for global efforts to improve public health.Featured Articles:Mutations in AMBRA1 aggravate β-thalassemia by impairing autophagy-mediated clearance of free α-globinLasalocid A selectively induces the degradation of MYD88 in lymphomas harboring the MYD88 L265P mutationAir pollution is associated with increased risk of venous thromboembolism: the Multi-Ethnic Study of Atherosclerosis

This episode of the VJHemOnc podcast covers updates in non-malignant hematological diseases from the 66th American Society of Hematology (ASH)... The post Post-ASH non-malignant highlights: updates in sickle cell disease, thalassemia, and hemophilia appeared first on VJHemOnc.

On this episode of Thal Pals, NinaMaria interviews Dr. Sujit Sheth, a renowned red cell doctor specializing in thalassemia and other red cell disorders. Dr. Sheth emphasizes the importance of assembling a dedicated care team, advocates for patient self-advocacy, and provides valuable insights into individualized patient care. He also discusses the impact of advancements in medical technology and the critical role of continuous communication within care teams. Tune in to learn more about optimizing care for thalassemia patients and the hopeful future of treatment options. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.  TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 guest featured in this episode have been compensated for their time.

In this week's episode we'll learn about asciminib plus dasatinib in Philadelphia chromosome-positive acute leukemia. In a phase 1 study, combining two tyrosine kinase inhibitors with distinct mechanisms of action had encouraging activity in patients with de novo disease. After that: new research demonstrates that the iron exporter ferroportin contributes to the iron-sensing properties of liver endothelial cells. But is it the primary mediator of systemic iron homeostasis? Finally: anemia in pregnant patients with beta-thalassemia minor. In the third trimester, about one-third of patients have hemoglobin levels of 9 grams per deciliter or lower. This report may help to guide the appropriate diagnosis of anemia while limiting unnecessary testing and interventions. Featured Articles:Asciminib plus dasatinib and prednisone for Philadelphia chromosome–positive acute leukemiaThe hepcidin-ferroportin axis modulates liver endothelial cell BMP expression to influence iron homeostasis in miceβ-Thalassemia minor is associated with high rates of worsening anemia in pregnancy

In this episode I cover the different type so anaemia as I have found it can cause much confusion and there are so many different types, from mild iron deficiency to types that can be life threatening. Iron deficiency anaemia: https://www.nhs.uk/conditions/iron-deficiency-anaemia/Bone marrow: https://my.clevelandclinic.org/health/body/22818-bone-marrowHaem and non haem iron: https://www.mkuh.nhs.uk/patient-information-leaflet/good-sources-of-ironVitamin C and iron: https://www.canr.msu.edu/news/iron_and_vitamin_c_the_perfect_pairAplastic anaemia: https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/aplastic-anaemia/Pernicious anaemia: https://my.clevelandclinic.org/health/diseases/22377-pernicious-anemiaAnaemia of chronic disease: https://my.clevelandclinic.org/health/diseases/14477-anemia-of-chronic-diseaseMCV on a blood count: https://medlineplus.gov/lab-tests/mcv-mean-corpuscular-volume/Leukaemia: https://www.cancerresearchuk.org/about-cancer/leukaemiaHaemolytic anaemia: https://www.hopkinsmedicine.org/health/conditions-and-diseases/hemolytic-anemiaSickle cell disease: https://www.nhs.uk/conditions/sickle-cell-disease/Thalassemia: https://my.clevelandclinic.org/health/diseases/14508-thalassemiasIron diet sheet: https://kingstonhospital.nhs.uk/information/iron-diet-sheet/Eating your greens: https://pubmed.ncbi.nlm.nih.gov/34034049/ Hosted on Acast. See acast.com/privacy for more information.

On this episode of Thal Pals, NinaMaria hosts Tamara Schryver, president of the Thrive with Pyruvate Kinase Deficiency Organization. They discuss the importance of nutrition for patients with hemolytic anemias such as thalassemia and PKD. Tamara offers practical dietary tips and emphasizes the significance of nutrient-dense foods and vitamins. Stay tuned for the next episode, where they delve deeper into these topics.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 featured in this episode have been compensated for their time.  

On this episode of Thal Pals, hosts NinaMaria Badalamenti and Dr. Kevin Kuo delve into the second part of their discussion on lab tests. They explore the impact of factors like menstruation, nutrition, and illness on ferritin levels, and emphasize the importance of monitoring and managing iron levels through diet and medication. They also explain how MRI is used to measure iron accumulation in vital organs such as the liver and heart, the implications of different readings, and the recommended frequency of these tests. The episode concludes with advice on working collaboratively with healthcare providers to keep track of essential lab tests and ensure overall health. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.   TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 featured in this episode have been compensated for their time.

In this week's episode we'll learn about refining risk stratification in T-cell acute lymphoblastic leukemia, or ALL. After that, we'll discuss a novel gene therapy approach in severe alpha-thalassemia. Investigators describe an innovative mouse model and an effective gene therapy approach, renewing prospects for the development of novel strategies to treat this disease. Finally, we'll hear about how genomic profiling has helped identify subgroups associated with distinct clinical phenotypes and outcomes in the molecular taxonomy of myelodysplastic syndromes, or MDS. Featured Articles NGS-based stratification refines the risk stratification in T-ALL and identifies a very-high-risk subgroup ofpatientsUse of HSC-targeted LNP to generate a mouse model of lethal α-thalassemia and treatment via lentiviralgene therapyMolecular taxonomy of myelodysplastic syndromes and its clinical implications

TSC News TV host Fred Richani interviews Dr. Layal Issa MD about her fantastic work with nonprofit organization Karma-Lebanon, which helps children suffering from cancer, thalassemia, and chronic illnesses, especially in these trying times of war. Donate today to support their cause: https://karma-leb.org/?product=donate-to-karma-lebanon   Note: This interview was filmed prior to the recent attacks on Lebanon. Follow Karma Lebanon online: https://www.instagram.com/karma.lb/ https://www.facebook.com/karmaleb   Karma Lebanon Interview Time Stamps: 00:00 Introducing Dr. Layal Issa of Karma Lebanon charity 00:39 Dr. Layal Issa on Karma Lebanon fundraising campaigns 02:21 Dr. Layal Issa on joining Karma Lebanon, Mariam Younes 03:26 Karma-Lebanon origin story with Mariam Younes 04:24 Dr. Issa explains Thalassemia, treating Lebanese children 07:42 Dr. Issa on challenges Karma-Lebanon faces 10:14 Resources needed to help Lebanese children 12:17 Most prevalent chronic illnesses among Lebanese children 13:26 Why you should donate, volunteer to Karma-Lebanon

On this episode hosts NinaMaria Badalamenti and Dr. Kevin Kuo discuss important lab tests for thalassemia treatment. They focus on hemoglobin, explaining its role in oxygen transportation, the significance of trends over specific numbers, and the differences for transfusion-dependent and non-transfusion-dependent patients. They also introduce ferritin, describing its function, the importance of trends, and the use of MRI for accurate iron measurement. The conversation emphasizes the need for monitoring and understanding lab results in context with patients' overall health and lifestyle.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 featured in this episode have been compensated for their time.

Today's Episode Charlee reviews chapter 14 from the Pediatric Morning Report book. A premature female neonate is born to a G1P0-1 mother at 24 weeks and 5 days gestation with a birth weight of 769g via spontaneous vaginal delivery after preterm onset of labor. The infant requires immediate endotracheal intubation as she is noted to be markedly pale and edematous. Oxygen saturation is in the 60%–70% range. Apgar scores are 1 and 6 at 1 and 5 minutes, respectively. Today's Host Charlee Quarless is a 3rd year medical student at Ross University. About Dr. Raj Dr Raj is a quadruple board certified physician and associate professor at the University of Southern California. He was a co-host on the TNT series Chasing the Cure with Ann Curry, a regular on the TV Show The Doctors for the past 7 seasons and has a weekly medical segment on ABC news Los Angeles. More from Dr. Raj www.BeyondThePearls.net The Dr. Raj Podcast Dr. Raj on Twitter Dr. Raj on Instagram Want more board review content? USMLE Step 1 Ad-Free Bundle Crush Step 1 Step 2 Secrets Beyond the Pearls The Dr. Raj Podcast Beyond the Pearls Premium USMLE Step 3 Review MedPrepTGo Step 1 Questions Learn more about your ad choices. Visit megaphone.fm/adchoices

On this episode of Thal Pals we're live in Atlanta, Georgia for the 2024 Cooley's Anemia Foundation's 2024 Patient-Family Conference. We assembled a panel moderated by Dr. Kevin Kuo and guest host Shae Ghosh. The panel dove into inspiring stories and practical advice from individuals living with thalassemia. Brian Goff, CEO of Agios Pharmaceuticals, opens with a heartfelt introduction, followed by a panel featuring Pranav Saha, Dr. Zahra Pakbaz, and Robert Mannino. Each shares their experiences balancing thalassemia with their personal and professional lives, emphasizing the importance of prioritizing health, being your own advocate, and following your dreams. The panel also discusses the value of learning from one's journey and from others, fostering a community that encourages thriving despite the challenges of thalassemia.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 featured in this episode have been compensated for their time.  

On this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalementi and Dr. Kevin Kuo dive into the topic of iron overload, a critical issue for patients with thalassemia. They discuss the body's mechanisms in handling iron, the dangers of iron overload due to blood transfusions, and the importance of chelation therapy. Dr. Kuo emphasizes the need for regular monitoring and patient-doctor collaboration, explaining the potential organ damage caused by excess iron. NinaMaria shares insights on managing one's health and the significance of patient education and communication. The episode highlights the various complications of iron overload, the role of liver and heart MRIs in monitoring, and the importance of adhering to chelation therapy to prevent severe health issues.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 featured in this episode have been compensated for their time.

On this episode of Thal Pals, your host NinaMaria Badalementi, along with special guests Yasmeen and Paris, takes listeners through a detailed discussion about Cooley's Care Walks. We start with Yasmeen and Paris sharing personal experiences with thalassemia, the significance of community, and encouraging participation in Cooley's Care Walks. The episode covers ways to get involved, the impact of fundraising, and the diverse activities surrounding these walks.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 featured in this episode have been compensated for their time.  

On international Thalassemia Day on 8 May 2024, children with the blood disorder, caused when the body doesn't make enough of a protein called haemoglobin, were treated to a special event as they received gifts and entertainment from many sponsors, particularly Nada Jergis, who has been sponsoring this event for many years. Jergis said she appreciated the donation by some people from Australia when she visited recently. Naseem Sadiq attended the event and filed this report.

 President, National Cooley's Anemia FoundationRalph is BACK!!Cooley's Anemia is a Fatal Genetic Blood Disease. The Cooly's Anemia Foundation is working with medical professionals enhancing the quality of life of patients and educating the medical , trait carriers and the public about Cooley's anemia/thalassemia major.“When I was diagnosed, the outlook was grim, a life expectancy into my late teens, early twenties, with many warning me that living a normal life – having a family, working, living very far into my adult years – was not likely, but faith brought me all that and more. And while there are still many mountains a person with thalassemia has to climb, we now are in a position where a well-managed patient can enjoy many of the same things as a person not living with thalassemia. It's a challenge, but I and others like me have learned to never give up. And definitely don't stop believing!”This episode is dedicated to encourage the Parents, Patients & Loved Ones that are learning about, managing & perservering everyday with Cooley's Anemia, the supporters of Thalassemia, Friends, Researchers & Physicians.. In Addition, this Show is a Dedication to the late Patient Ralph A. Cazzetta. He was a Cooley's Patient, a Nurse, Friend & Great Support Peer to Many in their Life Journey thru thriving as a Thal Patient!! History was made in 2022 at the annual board meeting of the Cooley's Anemia Foundation (CAF) when Ralph Colasanti was elected the first person with thalassemia to serve as National President of the Foundation's board of directors. The Foundation, which was started in 1954, is the primary voice for those with thalassemia, a group of genetic disorders, one of which is also called Cooley's anemia. People with severe forms of the disease require lifelong blood transfusions as often as every 2 weeks and often beginning in infancy.“We are very pleased to have reached this historic moment and know that Ralph's talents, skills, knowledge, and expertise will serve him well in this position,” says Peter Chieco, immediate Past National President of CAF. “Of equal importance, being a patient himself will provide a fresh perspective. No matter how deep the connection that I and our previous Presidents have with the thalassemia community, it is not quite the same experience as actually being a person who was born with and has lived with thalassemia for their entire lives.”“The fact that I am able to serve in this capacity speaks to the tremendous efforts of The Cooley's Anemia Foundation throughout the years,” says Ralph Colasanti. “Those that served before me helped propel many advances in the field of thalassemia over the last 20-30 years. Their commitment, with support from our donors, brought forth dedicated clinicians and researchers who are experts in thalassemia, not only advancing our quantity of life but the most important quality of life. These medical advances and the need for a safe blood supply are tirelessly promoted and supported by CAF.Ralph is a financial coach and IT consultant at Holy Angels School. He and his wife are the parents of a son and a daughter and recently welcomed their first grandchild.© 2024 Building Abundant Success!!2024 All Rights ReservedJoin Me on ~ iHeart Media @ https://tinyurl.com/iHeartBASSpot Me on Spotify: https://tinyurl.com/yxuy23baAmazon Music ~ https://tinyurl.com/AmzBASAudacy:  https://tinyurl.com/BASAud

 President, National Cooley's Anemia FoundationCooley's Anemia is a Fatal Genetic Blood Disease. The Cooly's Anemia Foundation is working with medical professionals enhancing the quality of life of patients and educating the medical , trait carriers and the public about Cooley's anemia/thalassemia major.This episode is dedicated to encourage the Parents, Patients & Loved Ones that are learning about, managing & perservering everyday with Cooley's Anemia, the supporters of Thalassemia, Friends, Researchers & Physicians.. In Addition, this Show is a Dedication to the late Patient Ralph A. Cazzetta. He was a Cooley's Patient, a Nurse, Friend & Great Support Peer to Many in their Life Journey thru thriving as a Thal Patient!! History was made in 2022 at the annual board meeting of the Cooley's Anemia Foundation (CAF) when Ralph Colasanti was elected the first person with thalassemia to serve as National President of the Foundation's board of directors. The Foundation, which was started in 1954, is the primary voice for those with thalassemia, a group of genetic disorders, one of which is also called Cooley's anemia. People with severe forms of the disease require lifelong blood transfusions as often as every 2 weeks and often beginning in infancy.“We are very pleased to have reached this historic moment and know that Ralph's talents, skills, knowledge, and expertise will serve him well in this position,” says Peter Chieco, immediate Past National President of CAF. “Of equal importance, being a patient himself will provide a fresh perspective. No matter how deep the connection that I and our previous Presidents have with the thalassemia community, it is not quite the same experience as actually being a person who was born with and has lived with thalassemia for their entire lives.”“The fact that I am able to serve in this capacity speaks to the tremendous efforts of The Cooley's Anemia Foundation throughout the years,” says Ralph Colasanti. “Those that served before me helped propel many advances in the field of thalassemia over the last 20-30 years. Their commitment, with support from our donors, brought forth dedicated clinicians and researchers who are experts in thalassemia, not only advancing our quantity of life but the most important quality of life. These medical advances and the need for a safe blood supply are tirelessly promoted and supported by CAF.“When I was diagnosed, the outlook was grim, a life expectancy into my late teens, early twenties, with many warning me that living a normal life – having a family, working, living very far into my adult years – was not likely, but faith brought me all that and more. And while there are still many mountains a person with thalassemia has to climb, we now are in a position where a well-managed patient can enjoy many of the same things as a person not living with thalassemia. It's a challenge, but I and others like me have learned to never give up. And definitely don't stop believing!”Ralph is a financial coach and IT consultant at Holy Angels School. He and his wife are the parents of a son and a daughter and recently welcomed their first grandchild.© 2024 Building Abundant Success!!2024 All Rights ReservedJoin Me on ~ iHeart Media @ https://tinyurl.com/iHeartBASSpot Me on Spotify: https://tinyurl.com/yxuy23baAmazon Music ~ https://tinyurl.com/AmzBASAudacy:  https://tinyurl.com/BASAud

On this episode, we reintroduce you to NinaMaria Badalamenti as our new co-host of Thal Pals. NinaMaria is a patient advocate who has previously appeared on the show. Alongside Dr. Kevin Kuo, the two discuss what's new in thalassemia.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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 featured in this episode have been compensated for their time.  

On this episode we're live in Los Angeles, California from the Cooley's Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia.    To learn more about Cooley's Anemia Foundation, click this link.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by Thalassemia.  Each episode, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and voices from the Thalassemia community.     TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution 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.  

Thalassemias are very frequently tested on the USMLE exams. In this podcast, I help you understand everything about thalassemias so you’re not stuck mindlessly memorizing details. Definitely helpful for Step 1-3. I also discuss a bunch of mechanistic things that may help you understand some concepts in cardiology. Audio Download

Welcome back to our weekend Cabral HouseCall shows! This is where we answer our community's wellness, weight loss, and anti-aging questions to help people get back on track! Check out today's questions:    Toni: I have low thyroid and osteoarthritis with two TKR. I have a genetic form of anemia called thalassemia minor. Could this be the cause gif my problems! I'm 65 post menopausal. I do s 3/2/2 intermittent fasting and have gif a year. 3 16 hours 2 nomad 2 no fasting I try to get sufficient calories during my eating window. Shall I stop for a couple of weeks and start again?   Anonymous: Hi Dr Cabral, Thank you for all the work you do! I have SIBO and am doing the CBO protocol and will be doing the "killing" phase for the 90 days followed by the 90 day "repair" phase. During both of these phases do we need to remove dairy, gluten & alcohol completely? I have a celebratory event in the later part of the year and was hoping to enjoy 1-2 cocktails, but unsure if this will ruin the entire protocol. Any advice?   Kelsi: hi dr. cabral! thank you i'm advance. ive struggled with mild cystic acne for many years, however, lately ive been getting a couple that somehow turn infected. they get incredibly swollen, have to be lanced and the culture comes back positive for staph infection. i avoid antibiotics at all costs but with staph (as ive listened to every podcast), you've stated this is one occasion that it's necessary…so i do. of course, i take S. bouldarii while on them. i'm just looking for confirmation that i'm on the right path. this is my plan. 21 day detox. CBO protocol / finisher heavy metal detox ive also ordered the stress mood and metabolism test to see my hormone levels. also, am i right to take the antibiotic if i have staph in the future?   Julia: Hi Dr Cabral! Just asking because i have been attempting to take an at home hormone blood test that was purchased from another company- before i discovered you. I want to do the test however i have an iud and have no menstruation in order to track where I'm at in my cycle. I started taking ovulation tests to check my LH in attempt to track my cycle but find it is not consistent. Do your blood tests require tracking cycle? Also any tips on finally testing my self! This stemmed from low libido. Im 34 yr old and feel like Im 70   Stacey: Hello Dr. Cabral I hope you are having such a beautiful and blessed day . I have a question on DNRS brain retraining . What's your opinion on this way of healing ? I recently bought the program and going to start once summer vacation is over with . It's 60 minutes a day dedication for at least 6 months so I'm a little intimidated but I've seen so many healing testimonies on it . What do you think about it ?   Thank you for tuning into today's Cabral HouseCall and be sure to check back tomorrow where we answer more of our community's questions!    - - - Show Notes and Resources: StephenCabral.com/2787 - - - Get a FREE Copy of Dr. Cabral's Book: The Rain Barrel Effect - - - Join the Community & Get Your Questions Answered: CabralSupportGroup.com - - - Dr. Cabral's Most Popular At-Home Lab Tests: > Complete Minerals & Metals Test (Test for mineral imbalances & heavy metal toxicity) - - - > Complete Candida, Metabolic & Vitamins Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Complete Stress, Mood & Metabolism Test (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Complete Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Complete Omega-3 & Inflammation Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - Get Your Question Answered On An Upcoming HouseCall: StephenCabral.com/askcabral - - - Would You Take 30 Seconds To Rate & Review The Cabral Concept? The best way to help me spread our mission of true natural health is to pass on the good word, and I read and appreciate every review!