Sunday, February 5, 2006
starts nonprofit to fight disease
By Charmain Z. Brackett
never thought she'd champion a cause until her daughter, Julia,
Julia, 7, has a rare blood disorder called Glanzmann's thrombasthenia.
Mrs. Smith, through the Glanzmann's Research Foundation, a nonprofit
organization she founded, helps raise money for research to find
year she was born, there were only 200 reported cases"
of the disease, said Smith, whose organization will be the
beneficiary of a fundraising dinner at the National Science
Center's Fort Discovery in March. The event will feature
a silent auction with items such as a celebrity hunting
was diagnosed with the disease when she was about 6 months
some complications when Julia was born, and she spent the first
two weeks of her life in intensive care.
was covered in bruises" after birth, Mrs. Smith said.
tests didn't show anything, she said.
At the time,
Smith and her husband, Dr. Alan Smith, were living in Birmingham,
Ala. The family returned to Augusta to visit Mrs. Smith's parents.
visit, Smith was awakened in the middle of the night by her daughter's
cries. When she went to check on Julia, she found her covered
in blood from a simple scratch on her face.
Anne Proctor, worked at the Medical College of Georgia's pathology
lab. Mrs. Smith took her daughter to MCG and asked that every
test be done to find out why Julia bled so profusely.
moved back to Augusta the next month.
was told what was wrong with her daughter, that people with GT
are missing a protein that helps blood to clot, she wanted to
learn more about the disease.
a blurb in the back of a medical journal, and that was it,"
She said she
spent a lot of time on the Internet putting her e-mail address
and phone number on the registries of different sites for people
with rare disorders in the hopes of locating someone else with
In the summer
of 2001, a grandmother of a GT patient from Ohio contacted Smith
and gave her $1,500 that she had raised through bake sales and
softball tournaments. The woman wanted the money to help others
with GT, Smith said.
Smith thought she'd donate the money to a hemophilia research
foundation, but then discovered that Dr. David Wilcox, of the
Medical College of Wisconsin, was conducting research on GT. That,
she said, spurred her to start the nonprofit.
few treatments for the disorder, she said, and the ones that do
exist are costly and some have their own dangers. Treatments include
bone marrow transplants and platelet transplants. The Smiths have
tried one medication, but a three-day supply is $20,000.
frequent nosebleeds, and she can't walk for a long time or take
part in some types of physical exercise because she bleeds behind
past few years, Smith has worked on several fundraisers for the
golf tournament nearly five years ago raised $5,000, and almost
all of the proceeds go directly to Wilcox's research.
the fundraisers and talks about the progress of his research.
GT and their family members stay connected through the foundation's
Web site, www.glanzmanns.com.
that there will be a cure for GT.
excited about that," she said. "I hear about things
and feel I can help make a difference. We're going to conquer
it, get rid of it. I'm sure of it."
©Copyright 2001-2006 The Augusta Chronicle. All rights reserved.