30
ACTIONS
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August 31, 2011
On August 16, 2011 - Governor Rick Scott signed a proclamation making September "Sandhoff Awareness Month" in the State of Florida. We chose the month of September since that is the month Kaleb was born. I will attempt to post the proclamation here but haven't had much success - you can read it ... See More
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March 17, 2011
Come out and join us for our first fundraiser. We are having a spaghetti dinner at the American Legion Hall, 271 W. Plant St., Winter Garden, FL on April 9th from 3-7pm. We have some great raffle items coming in,2 tickets to Arabian Nights, 2 adult theater tickets to see The Sound of Music star... See More
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March 2, 2011
On February 25, 2011, Timo Demetz lost his fight with Sandhoff's Disease and has gone home to Heaven where he is free to run, play and do all the things his earthly body would not alow him to do. Nadia and Juri, you are forever in our prayers and Timo will always be in our hearts. www.caringbridge/o... See More
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October 22, 2010
I started this causes page to help bring awareness to this deadly disease. I want to thank all of you who are supporting us and have become members. A cure is within reach but it's not happening fast enough - research relies heavily on donations and thats why we are asking you to share this cause wi... See More
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September 2, 2010
We are fundraising for NATIONAL TAY SACHS & ALLIED DISEASES ASSOCIATION INC. Join us in supporting them.