April 06, 2023
Picking up the torch her mother lit wasn’t what Taylor Burtz had planned for her life.
But after Helen Proctor Smith died in October 2019, Burtz knew she and her sister, Julia, had to carry on her mother’s fight for a cure for a rare blood disease known as Glanzmann’s Thrombasthenia.
“Me taking over was supposed to be temporary,” said Burtz, who is president of the Glanzmann’s Research Foundation, the organization started by her mother. “It’s hard to explain. This was never my dream, but it was always something I was going to do. It was never my dream, but it became my dream.”
Helen Smith started the foundation after the birth of her daughter, Julia, in 1998. As a newborn, Julia wound up in the neonatal intensive care unit for two weeks after a simple needle prick led to profuse bleeding.
“There were only 200 cases of GT the year of Julia’s birth, and it took batteries of tests and six months before Julia’s diagnosis was reached. Helen’s mother, Anne Proctor, who was a lab supervisor at the Medical College of Georgia at the time, helped put a name to the perplexing disease after running every test available,” according to the foundation’s website.
Smith created a community of support for those with the disease as well as raising funds for the research of Dr. David Wilcox at the Medical University of Wisconsin.
Wilcox has a passion for finding a cure before ever meeting anyone with the disorder. According to Burtz, Wilcox has found a cure in the lab, but the next step is the clinical trial phase. That step is an expensive one. She estimates it will cost $5 million.
Burtz, a Lakeside High School graduate, has been part of the organization since she was a pre-teen, attending and helping with fundraisers and later serving on the board. Since taking over as president, Burtz has pushed for Glanzmann’s awareness, revamping the website and appearing on various podcasts as well as starting one for the foundation called Bruised Not Broken – Life with Glanzmann’s Thrombasthenia. She’s also traveled to various conferences.
“We’ve grown the community by 300 people. Based on the statistics, there are only about 8,000 of us in the world if they are diagnosed,” she said. “There are almost 1,000 in our support group.”
Julia Smith serves as the organization’s vice president, but she’s taken a step back from being its face as she’s been pursuing her art history degree at the University of South Carolina Aiken. She recently recorded a podcast.
Burtz also worked to get the organization in front of others in the bleeding disorder community, which has led to the biggest endeavor she’s embarked on so far. In July, the foundation will hold its first-ever conference. It’s scheduled for July 26-29 in Boston, and one of those dates holds significant meaning for her.
“The conference will kick off July 27 which is Mom’s birthday,” she said.
Wilcox has helped Burtz coordinate aspects of the conference.
“He’s coming to the conference we’re doing in July, and he helped us build our speaker list,” she said.
Burtz has two main goals for the conference.
“We have to grow the foundation. We need sponsors and donors for the foundation’s operational budget so fundraising goes straight to research. That is massive,” she said.
Also she wants to give a face to the disorder by bringing together people with Glanzmann’s and the medical community to show real people who are affected by it.
“I was raised with the mindset that if your doctors know who you are, you will get better care. They’re more invested in how they can help,” she said.
She’s also hoping for additional treatments.
“There’s no other FDA approved treatment than NovoSeven,” she said. “Each vial is multiple thousands of dollars, and one dose is multiple vials.”
The conference will cover a variety of topics such as women’s health sessions including a session with an Israeli doctor on childbirth for women with Glanzmann’s; a history of GT and mental health.
Burtz said she’s excited about the conference and believes her mom would approve.
“Mom used to tell me – ‘I raised you with a specific purpose that was to be different from me, to be stronger, to be more independent.’ I thought ‘Would she want me to run (the foundation) like her? Would she want me to take the safe route? Would she not want me to take the risk?’” she said. “If I’m going to do this, I’m going to do it to the best of my ability.”
Although the conference will be in Boston, Burtz said the foundation’s continues to have strong ties to Augusta.
“This foundation wouldn’t exist without Augusta,” she said.