News

Foundation News & Updates

About 60 people join Sauble fun for SickKids Sunday

August 9, 2022

A fun walk/run at Sauble Beach helped raise more than $6,000 for SickKids hospital Sunday morning. Article content The annual eight-kilometer Sauble Beach Chamber of Commerce event had about 60 participants. It has raised more than $40,000 in support of bleeding disorders over the last several years, said Dave Fretz one of the event’s organizers….

Same but different; the challenges faced by the GT community

July 21, 2022

Glanzmann’s Thrombasthenia (GT) is a rare bleeding disorder, estimated to affect 1 in a million people. Compared to more “common” bleeding disorders such as hemophilia, GT receives a lot less attention when it comes to research and developments. Haemnet recently commenced the Glanzmann’s 360 Study which will explore the ways in which GT affects those…

Survey: Glanzmann’s 360 – helping to better understand the impact of GT

June 21, 2022

It’s no secret that not all bleeding disorders are created equally. A huge amount of time, research effort, and funding have improved our understanding of the impact of hemophilia on those living with it. Over time this has resulted in the development of effective treatments. By contrast, a brief glance at the number of publications…

Board Officers with Dr. Wilcox

The Lab in Charge of Curing Glanzmann’s Thrombasthenia

May 9, 2022

The last weekend of April 2022 was quite the weekend, to say the least. Board officers visited Dr. David Wilcox in his lab (the Kelly Weil Laboratory) at the Medical College of Wisconsin. The lab has been working for decades to make many advances in gene therapy including a specific type of gene therapy that…

Rare Across America

January 4, 2021

Join us for Rare Across America this February and March to meet your new and re-elected legislators, share your story, and make rare diseases a priority in the 117th Congress. Haz clic aquí para obtener información en español y para registrarte. WHEN February 22 – March 5, 2021 (Virtual Congressional meetings on March 3rd and…

20 Years of Connections: The Glanzmann’s Research Foundation

December 4, 2020

Wait how do you spell that? is a rare disease podcast produced by Patient Worthy. Patient Worthy talks about issues affecting people with rare and underdiagnosed conditions and interview advocates from across the community. In this episode, Colby speaks with our President Taylor Anne Burtz and Vice President Peter Zdziarski about their personal experiences with…

Help us on Amazon Smile Today!

November 30, 2020

Hi everyone, and happy holidays! With cyber Monday upon us, here is a great and easy way to help donate funding for a cure for GT.   Sign in to smile.amazon.com on your desktop or mobile phone. From your desktop, go to Your Account and select the option to Change your Charity. Or, from your…

My son has a life-threatening condition – but my best friend has the same one, which gives me hope

October 25, 2020

When her son was born with an extremely rare genetic condition, Annette Kellow 37, was devastated. But a strange coincidence is helping her through. I was chatting to my best friend, Irene, at our favorite nail salon when the technician accidentally nicked her skin, and her finger started to bleed. ‘I’ve paid to bleed,’ joked…

Dedicated to Finding a Cure

October 15, 2020

Patient Worthy has recently begun a partnership with the Glanzmann’s Research Foundation, a nonprofit patient organization dedicated to spreading awareness about Glanzmann’s thrombasthenia and finding a cure. We spoke with Vice President Peter Zdziarski about his involvement with the organization and how the foundation got to be where it is today. Peter is a patient…

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