We’re honored to announce that we’ve been selected as a 2024 RAREis Global Advocate Grant recipient by Amgen’s RAREis program. This recognition underscores our unwavering commitment to the Glanzmann’s Thrombasthenia community and the rare disease community at large, who inspire us every day with their strength and resilience amid care and research barriers. With this […]
Cian O’Sullivan tells Sarah Horgan about the blood disorder affecting his children, the judgment of strangers when they see the resultant bruises, and the respite the family enjoys at Barretstown. A Cork father has opened up about how quick society is to judge as his children struggle to cope with an extremely rare blood disorder […]
Glanzmann’s Thrombasthenia is a rare bleeding disorder characterized by the inability of blood to clot correctly due to a deficiency in platelet function. While managing this condition requires careful attention to various factors, including bleeding episodes and cardiovascular health, integrating physical activity into one’s lifestyle can improve overall well-being. Understanding Glanzmann’s Thrombasthenia Glanzmann’s Thrombasthenia poses […]
In the latest episode of “Bruised Not Broken: Life with Glanzmann’s 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 […]
“We are currently making significant strides in our testing of the clinical vector, yielding promising results thus far. These efforts are crucial in generating the preliminary data necessary to pave the way for our application and subsequent approval of a clinical trial for gene therapy for Glanzmann’s Thrombasthenia (GT). Additionally, we are in the process […]
In this podcast, host Taylor and guest Robie share a heartfelt conversation about Glanzmann’s 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. Want to Sponsor the Podcast? Contact Us Here Have GT? […]
Taylor Burtz knew it was a leap of faith to fulfill a dream of her late mother, but she also knew it was a chance that had to be taken. “I’m still kind of in shock that the event happened. It’s very surreal,” said Burtz, the president of the Glanzmann’s Research Foundation, an organization her […]
WE’RE BACK!!! After a brief hiatus while planning and organizing the 2023 GRF Conference, Bruised Not Broken: Life with Glanzmann’s 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 […]
Last week, Kate and I hopped over the pond to attend the Glanzmann’s Research Foundation’s (GRF) first ever educational conference in Boston, USA. The conference was a momentous occasion for the Glanzmann’s community, inspired by the work of Helen Smith. Helen founded the GRF in 2001 following the diagnosis of her daughter Julia with Glanzmann’s Thrombasthenia […]
Sabina Da Cunha, a 36-year-old mother with a post-graduation in chemistry and a career in Dubai, had everything under control. Her two children were living with her mother in Parra while she worked abroad. However, everything changed in 2019 when her son, Samuel, was diagnosed with Glanzmann’s Thrombasthenia at just one-year-old. This life-changing diagnosis compelled […]