Explorez tous les épisodes du podcast Bruised Not Broken: Life with Glanzmann Thrombasthenia
| Titre | Date | Durée | |
|---|---|---|---|
| Lauren's Adoption Journey: Parenthood with Glanzmann Thrombasthenia | 07 Apr 2024 | 00:27:02 | |
In the latest episode of "Bruised Not Broken: Life with Glanzmann Thrombasthenia," Melissa Zdziarski and guest Lauren Hurley share their heartfelt stories of navigating motherhood while affected by GT. Lauren, a GT patient from Massachusetts, recounts her lifelong battle with Glanzmann's Thrombasthenia and her determination to become a mother through adoption. The episode explores the complexities of the adoption process, touching on emotional challenges, financial considerations, and the significance of support networks. Melissa and Lauren offer valuable insights and encouragement for individuals with GT considering adoption, emphasizing the importance of research and communication with healthcare providers. | |||
| Resilience with Glanzmann Thrombasthenia: Robie’s Story | 05 Nov 2023 | 00:52:13 | |
In this podcast, host Taylor and guest Robie share a heartfelt conversation about Glanzmann Thrombasthenia, a rare genetic bleeding disorder. They discuss Robie's journey, struggles, surgeries, and life lessons. The dialogue covers adapting to the disorder, family decisions, and not letting it limit one's life. | |||
| Young Adults & Teens with Glanzmann Thrombasthenia | 02 Sep 2023 | 00:34:36 | |
WE'RE BACK!!! After a brief hiatus while planning and organizing the 2023 GRF Conference, Bruised Not Broken: Life with Glanzmann Thrombasthenia is back. This episode is slightly different than other episodes, and that's because not only were we able to record it together in person, but we sat around a table and just had a conversation about growing up with GT, transitioning to adulthood, and looking toward the future. | |||
| Gene Therapy, Haemnet & Glanzmann Thrombasthenia | 06 May 2023 | 00:53:34 | |
Taylor and Peter chat with Luke Pembroke from Haemnet. Luke is the Director of Community Engagement with Haemnet and spearheads their podcast, Haemcast. Haemnet is a specialist research and communications consultancy in the bleeding disorder community. You might be familiar with their name; they conducted the Glanzmann's 360 survey. It was during a podcast interview about the Glanzmann's 360 survey with Luke and their Director of Research, Kate Khair, that Peter and Taylor discovered that Luke was born with severe hemophilia B, and during the pandemic, he was a participant in a gene therapy clinical trial. With Dr. Wilcox's promising gene therapy research and a potential cure right around the corner, they knew they wanted to pick Luke's brain more on the process of his gene therapy. This episode dives into the who and what of Haemnet as well as diving into Luke's own experiences growing up with a severe bleeding disorder and his journey with gene therapy. | |||
| Diagnosing Glanzmann Thrombasthenia | 29 Mar 2023 | 00:29:59 | |
April’s episode of Bruised Not Broken: Life with Glanzmann Thrombasthenia features Dr. Alan Michelson. | |||
| A Glanzmann Thrombasthenia Patient's Advocacy Journey | 04 Mar 2023 | 00:26:17 | |
Esme Vazquez found her calling in life through her work in occupational therapy. She believes having Glanzmann Thrombasthenia helps her empathize and better care for the children she works with. Advocating for her patients became a passion that spilled over into her personal life and fueled her drive to advocate for the voiceless in her world of ultra-rare bleeding disorders. In a short time, she has become a champion for those underserved and is making waves in the national bleeding disorder community. She now works with the National Hemophilia Foundation on the National Research Blueprint to correct those gaps in patient care. | |||
| Mom's Side of Glanzmann Thrombasthenia | 05 Feb 2023 | 00:40:52 | |
Jessica and her husband, Nick, were informed of Mia’s Glanzmann Thrombasthenia diagnosis when Mia was just four months old. Now, two years after that diagnosis, Jessica is her daughter’s biggest advocate and is determined to spread awareness and education throughout her community. | |||
| The Highs and Lows of Glanzmann Thrombasthenia | 01 Jan 2023 | 00:36:28 | |
In this episode, we turn inward and speak with our very own Peter Zdziarski and Julia Smith. They allow us to take a glimpse into their lives growing up with Glanzmann Thrombasthenia by sharing their highs and lows throughout the years. These two jump outside of their comfort zones to encourage more people within the GT community to share their stories. If you want to share your story, you can do so in our website's Faces of GT section. | |||
| A Cure to Glanzmann Thrombasthenia on the Horizon? | 03 Dec 2022 | 00:18:55 | |
Join Peter and Taylor as they speak with Dr. David Wilcox, who has spent close to 30 years researching a cure and advocating in the medical research community for Glanzmann’s. He has an equity interest and intellectual property rights in the company. Dr. Wilcox is an Associate Professor of The Department of Pediatrics HEM/ONC/BMT at the Medical College of Wisconsin. The Content of this PODCAST does not necessarily represent the official views of the Medical College of Wisconsin or its sponsors. | |||