Just Listen: Voices of PK Deficiency Podcast
Just Listen: Voices of PK Deficiency is a podcast about PK deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PK deficiency. Each episode of the Just Listen podcast strives to provide listeners with critical education, the latest scientific updates, and voices from the PK deficiency community. Learn more about PK deficiency by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Just Listen: Voices of PK Deficiency 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.
Episodes
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 empowered the PKD community th...
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 and integrating physica...
On this episode, host Dr. Rachel 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 individualized patient...
On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachel 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 standardized care, especially in...
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 ...
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 g...
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 an...
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, car...
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...
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...
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 inten...
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 Pyruvat...
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 an...
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,...
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 in...
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 Defi...
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 their tre...
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://w...
On this episode, Dr. Rachel 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 jou...
Dr. Rachael Grace talks to Becky Herzog, mother of Remy about caring for a small child with pyruvate kinase deficiency. On this episode of our PKD Caregiver Series, we’ll talk about the challenges and lessons learned from parenting a child with this rare disease. Dr. Grace also gave some insight into why she became a pediatric hematologist.
SHOW DESCRIPTION
Popular Podcasts
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
The Clay Travis and Buck Sexton Show. Clay Travis and Buck Sexton tackle the biggest stories in news, politics and current events with intelligence and humor. From the border crisis, to the madness of cancel culture and far-left missteps, Clay and Buck guide listeners through the latest headlines and hot topics with fun and entertaining conversations and opinions.