Taylor Burtz is continuing the fight her mother started to raise awareness and find a cure for a rare blood clotting disease called Glanzmann’s Thrombastenia (GT).
“March is bleeding disorders awareness month,” said Burtz, chairwoman of the Glanzmann’s Research Foundation, an organization her mother, Helen Proctor Smith, started 20 years ago.
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Smith created the foundation and raised money for a cure after the birth of her daughter, Julia, who had the rare blood disease. Julia Smith is now in college.
After Helen Smith died in October 2019, Burtz decided to take the organization to a new level. In 2020, with the help of her board of directors, Burtz revamped the website CureGt.org. She applied for a grant through Google and received Google’s business suite. Through the upgrades, the organization has reached 50 additional people.
“That’s huge,” said Burtz.
The year Julia was born there were only 200 confirmed cases of GT, according to the CureGT website.
Patient advocacy as well as helping patients connect with one another has been the focus of the organization in the world of the pandemic, according to Burtz.
Burtz said she plans to get back to fundraising efforts this year.
In her lifetime, Smith raised more than $300,000 to assist Dr. David Wilcox, a researcher at the Medical College of Wisconsin, the website said.
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Burtz said that Wilcox has made breakthroughs in the area of blood disorders and has been approved for a human trial for a drug to help hemophilia A patients. While it’s not a drug for GT patients, Burtz said it’s a step in the right direction because it gives hope that treatment options for GT patients can reach a trial phase.
Not only did Smith advocate and raise money for a cure for her daughter and others with the disease, the Augusta resident made connections all over the world with doctors in China, Pakistan, India and any country who had an understanding of GT.
She gave presentations wherever she could about the disease. Smith appeared on the Discovery Channel’s “Mystery Diagnosis” program in 2010. In 2007, the family met with President George W. Bush as part of Julia’s Make A Wish, according to the foundation’s website. Also, Smith met with Georgia Senator Johnny Isakson who in 2008 worked to declare March 1 as National Glanzmann’s Thrombasthenia Awareness Day.
Not only was Helen Smith an advocate and fighter, she was an artist. An unfinished painting depicting a dragonfly will be the image used in 20th anniversary fundraising efforts, Burtz said.
Last year, the organization participated in Showpony’s We Give a Shirt Campaign and raised money.
To learn more about GT, visit www.curegt.org.
Charmain Z. Brackett is the Features Editor for The Augusta Press. Reach her at charmain@theaugustapress.com
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