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Foundation News & Updates

Lauren’s Adoption Journey: Parenthood with Glanzmann’s Thrombasthenia

April 7, 2024

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…

Advancing Gene Therapy for Glanzmann’s Thrombasthenia: Urgent Support Needed

March 26, 2024

“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…

Resilience with Glanzmann’s Thrombasthenia: Robie’s Story

November 5, 2023

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?…

A woman with Glanzmann's thrombasthenia giving a presentation in front of a screen.

Conference Fulfills Mother’s Dream; Opens Door For Future

September 14, 2023

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…

Young Adults & Teens with Glanzmann’s Thrombasthenia

September 3, 2023

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…

A group of people posing for a photo in front of a projector.

Reflections from the Glanzmann’s Research Foundation Inaugural Patient Conference

August 4, 2023

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…

A woman with Glanzmann's Thrombasthenia kneeling down in front of a display of rattan.

Glanzmann’s Thrombasthenia: A Mother’s Sacrifice and Advocacy

June 20, 2023

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…

Gene therapy, haematology & Glanzmann's Thrombasthenia podcast.

Gene Therapy, Haemnet & Glanzmann’s Thrombasthenia

May 7, 2023

This month, 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…

A group of people are standing in front of a purple background, discussing Glanzmann's Thrombasthenia.

We’re the Face of GT

April 25, 2023

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

A black and white photo of a woman kissing her mother while overcoming Glanzmann's Thrombasthenia.

Augusta Woman’s Legacy To Find Cure For Rare Bleeding Disorder Lives On

April 6, 2023

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’s Thrombasthenia. “Me taking over was…

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