Foundation News & Updates

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…

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…

Miao Miao, a four-year-old male domestic shorthair cat, was brought to the University of California, Davis veterinary hospital with persistent nosebleeds. Based on previous medical issues, his owners were aware that he had some variation of a blood platelet disorder, but the exact makeup of that was never discovered. Specialists with UC Davis’ internal medicine…

Introduction: Glanzmann thrombasthenia (GT) is a rare bleeding disorder (~1:1,000,000) caused by impaired function of platelet glycoprotein IIb/IIIa responsible for aggregation. This novel survey was designed to identify the burden of GT through better understanding of the management of the disorder and its psychosocial impact on patients and caregivers. Methods: Participants were recruited via a…

Little John Mary suffers from a rare hereditary disease: his platelets are not able to stop bleeding. Siniscola (Nuoro) – A father’s love for his son is all in a simple photo: in the left pane, there are the legs of Giovanni Maria, a child who will turn 4 in October, while those portrayed on…

Two of our GT patients have entered the 2020 Rare Artist Contest and need your votes for a chance to go to Rare Disease Week in Washington DC! Learn More About RareArtist.org Vote for Peter’s Art Vote for Cathy’s Art  

The Glanzmann’s Research Foundation (GRF), a 501(c)(3) nonprofit corporation, has a mission to increase awareness of Glanzmann’s Thrombasthenia, provide a network of support for families navigating a Glanzmann’s Thrombasthenia diagnosis, and to raise funds for a cure. We would like to formally address the increase in conferences, events, and programs that are being marketed towards…

Hi, If you are new to our community, welcome. If you are back after our brief internet hiatus, welcome back! I want to share a brief history for those of you just discovering our community. My mother, Helen Smith, founded the Glanzmann’s Research Foundation a few years after my little sister, Julia, was diagnosed. It…