Foundation News & Updates

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 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 Thrombasthenia Glanzmann Thrombasthenia poses…

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 Thrombasthenia and her determination to become a mother through adoption. The episode explores the…

We are making meaningful progress in testing our clinical gene therapy vector for Glanzmann Thrombasthenia (GT), and early results are promising. This essential work is generating the preliminary data needed to move forward with our FDA pre-IND (pre-investigational new drug) application, an essential step toward launching the first-ever gene therapy clinical trial for GT. The…

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.

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…

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 Thrombasthenia at just one-year-old. This life-changing diagnosis compelled…

Please help us spread awareness, educate, and cure the ultra-rare bleeding disorder Glanzmann Thrombasthenia. Please donate at https://bit.ly/3KZs0QL

Picking up the torch her mother lit wasn’t what Taylor Burtz had planned for her life. But after Helen Proctor Smith died in October 2019, Burtz knew she and her sister, Julia, had to carry on her mother’s fight for a cure for a rare blood disease known as Glanzmann Thrombasthenia. “Me taking over was…