About
Our Mission & History
GT & the Glanzmann’s Research Foundation
Glanzmann Thrombasthenia is an ultra-rare inherited bleeding disorder that affects platelet function and the body’s ability to form stable blood clots. Patients living with Glanzmann Thrombasthenia often experience severe nosebleeds, bruising, prolonged bleeding, and life-threatening hemorrhages despite having normal platelet counts.
The Glanzmann’s Research Foundation was created to increase awareness of Glanzmann Thrombasthenia, support families navigating a GT diagnosis, and help fund research toward improved treatments and a cure.
Helen Smith
Helen Smith had never heard of Glanzmann Thrombasthenia before the birth of her daughter, Julia, in 1998. Shortly after Julia’s birth, doctors realized something was wrong when a simple heel prick caused severe bleeding that required a lengthy stay in the neonatal intensive care unit.
As Julia continued experiencing dangerous bleeding episodes, Helen searched tirelessly for answers. At the time, there were only around 200 known cases of Glanzmann Thrombasthenia worldwide, making diagnosis and treatment information extremely limited.
Determined to help her daughter and other families facing the same rare platelet disorder, Helen founded the Glanzmann’s Research Foundation in 2001. She created one of the earliest online resources dedicated to raising awareness of Glanzmann Thrombasthenia and supporting patients, caregivers, physicians, and researchers around the world.
Helen worked closely with Dr. David Wilcox at the Medical College of Wisconsin to support research aimed at finding a cure for GT. Through advocacy, fundraising, education, and public outreach, she helped bring national attention to Glanzmann Thrombasthenia and raised more than $300,000 for research efforts.
Her advocacy included speaking engagements, educational presentations, collaboration with lawmakers, and media appearances focused on rare bleeding disorders and platelet function disorders. Her efforts helped secure recognition of National Glanzmann’s Thrombasthenia Awareness Day in Congress and the Senate.
Julia Smith
Julia Smith became the inspiration behind the Glanzmann’s Research Foundation after being diagnosed with Glanzmann Thrombasthenia at six months old. Growing up with a rare bleeding disorder meant managing frequent bruising, nosebleeds, and unpredictable bleeding episodes.
With guidance from her mother, Julia learned how to manage Glanzmann Thrombasthenia while continuing to live an active and fulfilling life. She became an important voice within the GT community, helping other children and families better understand the condition and how to manage difficult bleeds without panic.
In 2007, Julia met President George W. Bush through the Make-A-Wish Foundation, using the opportunity to educate others about Glanzmann Thrombasthenia and the challenges faced by patients with inherited platelet disorders.
As she grew older, Julia continued demonstrating resilience while pursuing her education and traveling internationally, showing that individuals living with Glanzmann Thrombasthenia can continue to pursue their goals and ambitions.
Taylor Burtz
Taylor Burtz has been involved with the Glanzmann’s Research Foundation since its earliest days. As Julia’s older sister, Taylor witnessed firsthand the challenges that Glanzmann Thrombasthenia created for patients and families.
Over the years, Taylor helped with GT awareness campaigns, fundraising events, and educational projects focused on rare bleeding disorders. Following Helen Smith's passing in 2019, Taylor stepped into a leadership role within the foundation to continue the mission her mother had begun.
Today, Taylor continues to work to raise awareness of Glanzmann Thrombasthenia, support families affected by GT, and strengthen the growing global community connected through the Glanzmann’s Research Foundation.
The foundation remains committed to supporting research, education, advocacy, and awareness efforts focused on Glanzmann Thrombasthenia and other rare platelet function disorders.
If you have found the GRF because you or a loved one have recently been diagnosed with GT, we want to let you know that you are not alone. We have a vibrant community of GT patients and their caregivers who are ready to share their stories, experiences, and remedies with you.
Find out more about our online community.