July 22, 2020
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 was the early 2000’s, the internet was still pretty new, and Mom was inspired to create a place for people with Glanzmann’s Thrombasthenia to connect. This idea was the start of our GT community—an idea that was improbable before the internet due to the rarity of this bleeding disorder.
Mom was not only the backbone of the Glanzmann’s Research Foundation but also the voice. Julia might have inspired the Foundation, but the families that Mom came to know drove her daily to unapologetically fight for raised awareness and a cure.
Life in our house was pretty ordinary, sprinkled with a healthy dose of philanthropy. From age eleven until graduation, every school project was dedicated to raising awareness and educating others about Glanzmann’s. Give my family a platform and we gladly and enthusiastically pontificate the importance of our cause to anyone nearby. This passion drove Mom to kick down doors and take our mission to the halls of Washington, D.C., putting GT in the national spotlight.
Even though Mom is gone, I can assure you that her passion remains. Julia and I have assumed the roles of co-founders for the Foundation, and together we have assembled Mom’s dream board of directors. Before, the board consisted of respected professionals who cared deeply for the Foundation. Now, the board consists of longstanding members of our GT community, people that Mom leaned on repeatedly for support and advice.
With the ever-advancing technology and our ever-growing community, raising awareness is even more critical today than it was 19 years ago. Our goal is to raise awareness through our website and charge forward with fundraisers to help continue to fund Dr. Wilcox’s research for a cure.
I am honored to step into the President’s role, and I have very big shoes to fill. My promise to you is that I will do my best to make each and every one of you proud. Our entire board is available any time, and my door is always open if you ever need anything.
I am incredibly excited to see what the future holds for us!
Taylor Anne Burtz