BENEFITING: FAMILIES FOR FRAGILE X
EVENT DATE: Dec 05, 2015
Tina Chartouni wrote -
Dear Friends and Family,
Thank you for visiting my donation page. Your support means more than you can ever know! Our 7th Annual Families for Fragile X 5K Run/ Walk is coming up on Saturday, December 5th. This year we are calling it Monkey Madness 5K, as we will be running/walking through the Zoo. We need your help to make this event a success!
Here are a couple of important facts about Fragile X Syndrome (FXS):
-FXS is a neurological disorder that causes SEVERE cognitive delays, speech delays, and sensory dysfunction.
-33% of children diagnosed with FXS are also diagnosed with Autism.
- It is estimated that 1 in 129 females in the general population carry the Fragile X pre-mutation.
-The syndrome affects approximately one in 3,600 males and one in 8,000 females.
As most of you know, my dear nephew / godson, Calincito, was diagnosed at 15 months old with FXS. Today he is 8 years old. Calincito is constantly improving, and we couldn't be blessed with a more beautiful, happy, and determined little boy. Today is a time of change and progress, and we have hope that through the amazing research that is currently being conducted, we will soon have much more effective drug treatments available to significantly improve the lives of our loved ones struggling with this difficult disorder. And so, that's why FAMILIES FOR FRAGILE X is so important. We created this foundation to help support parents, provide education about FXS, give grants to families to attend the local Fragile X Clinic for evaluations, and raise money for research to find a cure. By making a tax-deductible donation, you can truly make a difference in the lives of those affected with Fragile X. Any amount you feel comfortable giving is deeply appreciated. After all, every dollar counts! And if you would like to attend our event, please click above on "Register for this event". It is going to be so much fun...a 5k Run/ Family Walk through the ZOO, bounce houses, food, music, great friends, and lots more! We hope to see you there! With your support, we can make a positive impact today in the lives of those living with Fragile X Syndrome.
A heartfelt thanks,