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Foundation News & Updates
Conference Fulfills Mother’s Dream; Opens Door For Future
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 Thrombasthenia
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…
Reflections from the Glanzmann’s Research Foundation Inaugural Patient Conference
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 Thrombasthenia…
Glanzmann Thrombasthenia: A Mother’s Sacrifice and Advocacy
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…
Gene Therapy, Haemnet & Glanzmann Thrombasthenia
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…
We’re the Face of GT
Please help us spread awareness, educate, and cure the ultra-rare bleeding disorder Glanzmann Thrombasthenia. Please donate at https://bit.ly/3KZs0QL
Augusta Woman’s Legacy To Find Cure For Rare Bleeding Disorder Lives On
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…
Diagnosing Glanzmann Thrombasthenia
April’s episode of Bruised Not Broken: Life with Glanzmann Thrombasthenia features Dr. Alan Michelson. Dr. Michelson’s achievements throughout his almost 50-year career in medicine are numerous. He is currently Professor of Pediatrics and Medicine, Emeritus at Harvard Medical School. He also serves as the Center for Platelet Research Studies’ Director Emeritus. He was formerly the…
A GT Patient’s Advocacy Journey
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…
Mom’s Side of Glanzmann Thrombasthenia
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. Join us with special guest host Glanzmann’s Research Foundation’s secretary, Melissa Zdziarski, as…
The Highs and Lows of Glanzmann Thrombasthenia
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…
My son’s rare life-threatening illness has him bleeding in A&E weekly – I’m worried about the strikes
Last Saturday night, I frantically rushed to A&E with my four-year-old son Felix. He has a rare, life-threatening bleeding disorder called Glanzmann thrombasthenia. Felix’s condition means his blood has difficulty clotting, which results in spontaneous and life-threatening bleeds at any time, frequently from his nose and mouth. On a day-to-day basis, even a slight bump or scrape in…
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