I founded the Glanzmann’s Research Foundation, a 501(c)3 organization in 2001 after learning about the research being done at the Medical College of Wisconsin by Dr. David Wilcox. Wilcox’s work showed great promise in finding a cure for Glanzmann’s Thrombasthenia (GT). Once I’d learned from him that no amount of research money was too small, I immediately started raising money to assist him with his research. To date, over $200,000 has been donated by the Glanzmann’s Research Foundation.

Dr. Wilcox has been able to correct GT in his research lab by using gene manipulation. With additional funding and public awareness GT can be cured in as little as 10 years. This gene manipulation has also been successful in correcting hemophilia as well as repairing red blood cell that were damaged during chemotherapy.

I refuse to allow a lack of money and public awareness to be the reason why my daughter, GT patients and hemophilia patients around the world have to continue to live with these terrible bleeding disorders.

I developed the Glanzmann’s Research Foundation website in 2001 as a resource for myself and other GT patients, family and healthcare providers because information was difficult to find and other people with GT were even harder to find, at the time I only knew of 4 other GT patients in the world with whom I’d had contact with through email. I thought a website would be a good way to share any and all information I found with others and establish contact with other GT patients.

Recently, I was honored by receiving the Jefferson Award for Public Service. Presented on a national and local level, the Jefferson Award was developed in 1972 to serve as a Nobel Prize for public service. The prestigious award was named for President Thomas Jefferson, whom the Board felt “best reflected the spirit of excellence in America.”

The Jefferson Award’s Board of Selectors chooses the winners every year. Past winners include Barbara Bush, Colin Powell, Oprah Winfrey, Bill and Melinda Gates, Dr. Condoleezza Rice, and Peyton Manning. A local panel of judges in over 90 U.S. communities selects winners who are grassroots “unsung heroes.” From each community, the Board selects one local winner to be honored and represent their community for the Jefferson Champion Award which is awarded during the National Ceremonies in Washington DC every June. I am humbled by this award and feel somewhat embarrassed to have been recognized in this way because the motivation for my efforts originated with trying to help my daughter. Now I’m committed to helping the entire GT (and hemophilia) community and I’m hopeful that this amazing opportunity will further my efforts to raise money for research and public awareness.

Julia’s fight with GT has become my life’s work. I look forward to the day when there is a cure for this debilitating disorder – when Julia and other GT patients can no longer worry about a nosebleed, bruising, or internal bleeding from even the least little bump or fall. “Sometimes the phone rings at 2:00 a.m.,” she said. “It’s exhausting, but if my child were bleeding and might die, I hope someone would be there to answer my phone call.” I’m here; ready to help whenever and wherever I can.

With our continued support, Dr. Wilcox expects to be able to cure GT within the next 10 to 15 years. Imagine being able to participate in advancing medical science so far that GT becomes a footnote in history alongside polio, scurvy, small pox and all the other diseases and disorders we no longer live in fear of.

Helen Smith
Founder
Glanzmann's Research Foundation
http://www.CureGT.com
706-533-4818