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June 15th, 2009, Jefferson Award presentation in Washington, D.C.

"On a bright spring morning when she was 7 months old I walked into my daughter’s bedroom and experienced every mother’s nightmare…

My baby was whimpering, she was covered in blood from head to toe, her arms, legs, chest, diaper, and sheets were all saturated in blood. Her hair was matted with blood, her eyelids were sealed shut with dried blood, even her mouth was filled with blood. It was a scene from a nightmare or a horror movie; something straight out of a Stephen King novel, only this was real

That was the night I learned what a life threatening nosebleed looked like.

That was the night I learned the seriousness of Julia’s recent diagnosis of Glanzmann’s Thrombasthenia, GT for short….

That was the night I learned that her doctors knew little more than I did about GT…

That night was a turning point in my life. I had a choice to make. I could love my daughter, continue to mother her and let her doctors GUESS at how best to treat her, OR I could love my daughter, continue to mother her and become an expert in the disease myself.

GT is a rare bleeding disorder for which there is currently no cure. At the time that Julia was diagnosed information, resources, and support for patients & parents were non-existent.

By the time Julia turned 2 years old I had started the Glanzmann’s Research Foundation. What began as a personal crusade quickly became much more.

Today, almost 9 years later, I reach around the world from my office, in my home. The Foundation raises money to support research. It serves as a clearing house for critical information used by doctors, patients and family.

I’ve created classroom care plans for school districts with GT students, consulted with doctors from all over the world, and located physicians for GT patients in need of experienced care.

The Foundation also provides emotional support for the diagnosed and their loved ones.

Any one can call me, any time, any place, for any child. I am available 24/7.

Today,research funded by the Foundation is in the beginning stages of human trials. GT has been cured in the lab. The curative method used to cure GT has also succeeded in correcting hemophilia, and has repaired red blood cells in cancer patients damaged by chemotherapy.

It is not a matter of IF there will be a cure.

It’s a matter of WHEN.

I refuse to accept that Julia, and countless other people across the globe. have to continue to live a nightmare because of a lack of awareness and money.

It is blood that binds us all together, tears at our hearts, and blood that changed my life. I know that I’ve made a difference, for Julia, and everyone else who suffers with GT.

Today, instead of living a mother’s nightmare, I’m working and will continue to work tirelessly to make a dream come true, .for mothers and their children around the world, until the cure moves out of the research lab and into our children. Thank you"

Follow up:

Thank you for all of your prayers and support! Things went very well in DC. I made it through my speech better than I'd expected. My amazing friend Lucy helped me write the speech and then I was introduced to a man who is a retired, nationally known speech writer (he wrote speeches for Ronald Reagan!) who fine tuned the speech and gave me some great advice about my presentation. I must say that the speech touched some hearts and brought tears to almost everyone in the room, including me. It was memorable and that's all I wanted! I'll tape the speech soon and put the video on the home page.

Dr. Wilcox and I met with the Deputy Direction of the Heart, Lung and Blood division of the National Institute of Health (NIH). Congressman Gingrey and staffers for other congressman attended the meeting. I gave my speech again and then Dr. Wilcox gave a powerpoint presentation. I plan on following up with NIH as well as the congressmen regularly so they don't forget about us! I also met briefly with Senators Saxby Chambliss and Johnny Isakson and refreshed their memories about GT and the National GT Awareness Day that they both sponsored. I will also follow up with both senators to seek their advice on additional funding for GT research.

The trip was amazing and I met some remarkable people. I've never been with a more inspiring group of people; they were from all walks of life. A gardner who immigrated to the US from Mexico, never finished high school but raised 2 boys, (one of them is a lawyer) and began a foundation along with other gardners to provide scholarships to kids who want to go to college. A retired CEO from Kroger who started a program called Crayons to Computers so that teachers could get classroom supplies without having to pay out their own pockets. I met a lady who along with her sister started a foundation that supplies Kevlar vests to police officers after their brother was killed in the line of duty because his precinct could not afford vests. I met a young lady who started Unite for Sight when she was just 19 because while working for an opthamologist she learned that most cases of blindness are preventable if people had access to proper vision care - her organization is international now and has helped over 2 million people!

I'm so glad that Milledge and Julia were able to meet these amazing people and hear their stories because they got to see first hand that one person can make a difference; it doesn't matter who you are or how old you are; if you see a need you can step up and help find a solution.

This is a non profit website. The goal of this site is to provide the general public, parents, loved ones, and the medical community with accurate information. All information is taken from sources believed to be reliable. No treatment of GT should be undertaken without medical supervision. Donations should be made to the Glanzmann's Research Foundation.
All donations are tax deductible

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