Saturday, February 28, 2009

Rare Disease Day, and lots of Pictures!

Please show your support and sign the petition for Rare Disease Day


Also please take a moment out of your busy day and educate yourself on a Special Disease / Disorder or just the organizations that are trying to bring light to all those who are affected. This may be something that means nothing to "you" but it means the world to me! Please help us make a difference. Just one more person who understands is victory to me!


http://www.rubinstein-taybi.org/ Rubinstein-Taybi Syndrome Family Resource Site


http://www.rubinsteintaybi.com/ Special Friends Foundation


http://www.stephanie-hunt.com/index.htm Stephanie Hunts page for Rare Disease day and RTS Fundraisers


http://rarediseases.org/%20 NORD - National Organization for Rare Disorders
Also check out the links on the right for other RTS Family Blogs!


Thank you for taking the time to learn more about our struggle!!


Below are some pictures that were taken when we had the opportunity to meet some of the RTS sweeties in our area.

February 2008 Incredible Pizza - 4 RTS Sweeties in attendance








March 15, 2008 Frankies 1st Birthday Party





June 2008 , RTS Barbecue at Frankie's House










December 2008 , Hanging out with Bella


January 2009 - Rest in Peace Princess Bella! We Miss you!!!



Thanks for looking!! Love Frankie :)




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