Web posted Sunday, February 5, 2006

Mom starts nonprofit to fight disease
By Charmain Z. Brackett
Correspondent

Helen Smith never thought she'd champion a cause until her daughter, Julia, was born.

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 a cure.

"The 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 weekend. Julia was diagnosed with the disease when she was about 6 months old.

There were some complications when Julia was born, and she spent the first two weeks of her life in intensive care.

"She was covered in bruises" after birth, Mrs. Smith said.

Routine blood 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.

During the 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.

Smith's mother, 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.

The Smiths moved back to Augusta the next month.

When Smith 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.

"I found a blurb in the back of a medical journal, and that was it," she said.

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 the disease.

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.

At first, 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.

There are 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.

Julia has frequent nosebleeds, and she can't walk for a long time or take part in some types of physical exercise because she bleeds behind her knees.

During the past few years, Smith has worked on several fundraisers for the foundation.

The first golf tournament nearly five years ago raised $5,000, and almost all of the proceeds go directly to Wilcox's research.

Wilcox attends the fundraisers and talks about the progress of his research.

Those with GT and their family members stay connected through the foundation's Web site, www.glanzmanns.com.

Smith believes that there will be a cure for GT.

"I'm 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."

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