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TSC International Conference

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We would like for our entire family of four to attend the Tuberous Sclerosis Complex International Conference. It is being held on July 3-6, 2014 in Washington D.C. The Tuberous Sclerosis Alliance is an amazing organization driven to help those affected by Tuberous Sclerosis Complex or TSC. We as a family have given our time and money to help find a cure or better treatment options for those affected by TSC. This time we are actually asking for a personal donation so that we can attend this amazing International TSC Conference. Our oldest daughter was born with TSC 15 years ago and it has been a very difficult journey. She has many of the manifestations associated with TSC. She has tuber shaped tumors that grow throughout her vital organs. She has 27 tumors in her brain, tumors in her eyes,hip,jaw,heart,skin and too many to count in her kidney's.
She has undergone two brain surgeries and has a device implanted to help with her seizures. The only time she has ever been seizure free was the first three months of her life. She suffers from autism and is developmentally delayed. Her personality and her smile are contagious and we wouldn't have her any other way.
We are not able to travel much but would love to attend this conference so that we can prepare ourselves for her future. We are always asking for donations for research but this time we are asking for your help in planning for whatever the next steps are in helping our daughter live. Most people would be asking for a trip to Disney Land but this conference will help us make sure that we can still have our daughter for when we can afford to go to Disney Land. This cost will cover the registration, hotel, airfare, day camps and one on one help for our daughter. We would also like to be able to take the kids to see some of the monuments and museums. If we reach our fundraising goal we would like to donate that money to help other families attend the conference.  I only hope that you can find it in your heart to help us attend something that will be so educational, eye opening and inspiring. We thank yo so much!
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Donations 

  • Kathy Dory
    • $150 
    • 10 yrs
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Organizer

Dana Holinka
Organizer
Thornton, CO

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