Just Listen: Voices of PK Deficiency Podcast

This special crossover episode brings together advocates from PK deficiency, thalassemia, and sickle cell disease to share insights from the Red Cell Revolution and the powerful connections formed across rare hemolytic anemias. NinaMaria Badalamenti leads a heartfelt conversation with Jill Welle, Laurice Levine, and Cassandra Trimnell about the common challenges these communities face, from fatigu...

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachael Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation  to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the importance of these guidelines in providing standardi...

On this episode, Dr. Rachael Grace is in conversation with Dr. Sujit Sheth about iron overload. You'll learn about iron overload and why it occurs in pyruvate kinase deficiency, explain the potential complications as well as the importance of managing and monitoring iron overload.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended...

Join Dr. Rachael Grace as she interviews Dr. Eduard van Beers, a leading expert in rare anemia including Pyruvate Kinase (PK) deficiency. They discuss the clinical challenges, benefits, and complications associated with transfusions for PK deficiency, underscoring the importance of personalized care and international collaboration for optimizing patient outcomes. For more information on the Intern...

On this episode of Just Listen: Voices of PK Deficiency, host Dr. Rachael Grace interviews Dr. Andreas Glenthøj, a hematologist from Copenhagen University Hospital, about his journey into genetic red blood cell disorders and the latest international guidelines for managing PK deficiency. They discuss various complications like iron overload, bone density issues, and pulmonary hypertension, along w...

On this episode, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, discusses the Life Stage Model initiative with patient advocacy leaders, Tamara Scriver and Alejandra Watson. They delve into the work of the PKD Advocacy Advisory Council (AAC) and how it addresses the unmet needs of the community. The conversation highlights the development of the Life Stage Model, wh...

On this episode of Just Listen: Voices of PK Deficiency, guest host Janie Davis (Director, Patient Advocacy at Agios) is joined by special guests Tamara Schryver, Jill Welle, and Alejandra Watson to discuss the impact and organization of the second international PKD Conference. They share their experiences, the importance of international collaboration, and key moments from the event that empowere...

his episode, Dr. Rachael Grace welcomes back Tamara Schryver, PhD, RD, President of Thrive with PK deficiency, to discuss the essential role of nutrition and physical activity for individuals with PK deficiency. They explore the importance of iron management, vitamin intake, and tailored dietary plans developed by registered dietitians. Dr. Schryver offers insights into working with picky eaters a...

On this episode, host Dr. Rachael Grace interviews Dr. Satheesh Chonat, a pediatric hematologist and expert in red cell disorders. They discuss Dr. Chonat's career path and focus on the complexities of managing anemia in patients with pyruvate kinase deficiency, emphasizing the role of the spleen. They explore why splenectomy might be considered, potential risks and benefits, and the importance of...

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachael Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation  to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the importance of these guidelines in providing standardi...

On this episode, Dr. Rachael Grace talks with the King family. Jennifer and Jerry King have been raising William and Lily. Both have pyruvate kinase deficiency and we discuss how they've managed the disease with their two children..   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the grea...

On this episode, Dr. Rachael Grace talks with Jessica Kellar and her teenage son Travis. They discuss Travis' diagnosis, actively involving him in his own care and how to navigate life as a teenager with pyruvate kinase deficiency.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the great...

What does it mean when a parent has pyruvate kinase deficiency? On today's episode we welcome back Nathan Thompson, a father with PK Deficiency. He has two daughters. He's joined today by his daughter Zoe. Here, we learn about parenting with PKD and all of the challenges associated with it.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is...

On this episode, Dr. Rachael Grace is in conversation with Carl Lander, Chair of the Steering Committee for the Peak Registry and International Collaboration Director of Thrive with Pyruvate Kinase Deficiency. Here they discuss the latest with the Peak Registry. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregiv...

On this episode, Dr. Rachael Grace is in conversation with Claire Egan, Senior Genetic Counselor with InformedDNA, to talk all about genetics.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK...

Dr. Rachael Grace returns with patient advocate (and PK Deficiency TikTok influencer) Karla Chichester. On this episode, Dr. Grace and Karla dispel some of the biggest myths surrounding Pyruvate Kinase Deficiency. Originally aired on September 29, 2022. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency (PK Deficiency) and is intended for patients,...

On this episode, Dr. Rachael Grace is in conversation with Dr. Sujit Sheth about iron overload. You'll learn about iron overload and why it occurs in pyruvate kinase deficiency, explain the potential complications as well as the importance of managing and monitoring iron overload.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended...

Our guest today is Dolores Dumas. Dolores is a 73-year-old living with PK deficiency, and was diagnosed as a teen with nonspherocytic hemolytic anemia. During a visit with a new hematologist, she received a definitive diagnosis of PK deficiency. Dolores feels grateful that she finally has a name for her condition. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Ki...

What does it mean when a parent has pyruvate kinase deficiency? On today's episode we welcome back Nathan Thompson, a father with PK Deficiency. He has two daughters. He's joined today by his daughter Zoe. Here, we learn about parenting with PKD and all of the challenges associated with it.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is...

On today's episode, we travel to New Orleans for a discussion about aging with pyruvate kinase deficiency (PKD) with returning guests Jill Welle and Tamara Schryver. Janie Davis, Associate Director Patient Advocacy at Agios Pharmaceuticals, leads the conversation.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, car...

On this episode, we interview Alejandra Watson and Laura Miller D'Angelo of Pyruvate Kinase Deficiency Foundation. We learn more about the organization as well as Alejandra's experience as a caregiver for a child with PKD as well as Laura's experience living with PKD.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK Deficiency) and is intend...

On today's episode, your host, Dr. Rachael Grace is in conversation with Dr. Matthew Heeney. Dr. Heeney's research is focused on the management of patients with sickle cell disease and rare iron disorders. Today's podcast is focused on understanding clinical trials, particularly for rare disorders.    SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficien...

We're LIVE from New Orleans, Louisiana! Listen to our live podcast panel featuring members of the sickle cell, pyruvate kinase deficiency, and thalassemia communities and leading KOL's in each field. We are proud to introduce the Red Cell Revolution! The Red Cell Revolution is an Agios patient advocacy movement that is driven by a relentless desire to find common ground with these communities and...

Dr. Rachael Grace welcomes back Alejandra Watson of the Pyruvate Kinase Deficiency Foundation as well as her son Jonathan to discuss transitioning from childhood to adulthood. We'll learn about how Jonathan took over some responsibility of his care as he grew older and went off to college.   Learn more about the Pyruvate Kinase Deficiency Foundation at https://www.pkdf.org   SHOW DESCRIPTION Just...

On this episode, Dr. Rachael Grace, a pediatric hematologist, clinical researcher at the Dana-Farber/Boston Children's Cancer and Blood Disorders Center and previous guest on the podcast fills in as guest host. She interviews Dr. David Nathan, a pioneer in the field of hematology and pyruvate kinase deficiency. She also interviews Jill Welle, a patient and previous guest on the show to discuss her...