My Birthday Wish for Fragile X
Donation protected
Dear Friends,
My 44th birthday is just around the corner and this year I have the honor to share my day supporting my most special nephew Calincito in an awesome fundraising 5k walk/run at the Miami ZOO!!! As most of you know, he has a genetic disorder called Fragile X Syndrome. So this year the most rewarding and heart filling gift I could ask for would be for your support….My goal is to raise $1000 to support FAMILIES FOR FRAGILE X, the non-profit organization my amazing sister and momma of Calincito, Vanessa, created alongside other amazing families here in Miami.
For those of you who have never heard of it, Fragile X Syndrome (FXS) is a neurological disorder, and is the leading inherited cause of cognitive impairment and the leading known genetic cause of Autism. In addition to developmental delays, individuals with FXS struggle with a variety of sensory and behavioral difficulties as well. While there is not currently a cure for FXS, there are a few drugs currently in clinical trials that are proving to GREATLY improve many of the more troubling symptoms of FXS, and SIGNIFICANTLY improve the lives of the individuals and families that are struggling with this difficult disorder.
I LOVE YOU ALL AND THANK YOU FOR CELEBRATING MY BIRTHDAY AND MY PRECIOUS CALINCITO!
http://familiesforfragilex.com/
From my sister Vanessa (mamma of Calincito):
“When Calincito was first diagnosed, our worlds collapsed. We were scared, confused, heart broken and desperate for information on how to best help our little boy. After we made it through our initial stages of shock and mourning, with the amazing love and support of our friends and family, we picked ourselves up, and began our life-long mission of helping our son develop the skills and tools he needs to thrive and enjoy life to the fullest. We focused on getting him the supports that he needed both at home and at school, we changed how we planned our daily and leisurely activities so that all would go smoother, and most importantly, we surrounded him with love and acceptance. We are grateful that today Calincito is a happy, energetic, and loving 11 year old boy. He has eyes that twinkle and a smile that lights up any room. His three little brothers, Santiago, Nicolas, and Alejandro love and support him and are becoming the best advocates that he could ask for!
Ten years ago (just after Calincito's diagnosis), we along with the help of my amazing little sister, Tina Chartouni-Calle, and a few other affected families, started a foundation called Families for Fragile X, in order to increase awareness of this disorder, support families affected by it, and raise money for research to find better treatments and maybe even a cure for FXS. “
http://familiesforfragilex.com/
My 44th birthday is just around the corner and this year I have the honor to share my day supporting my most special nephew Calincito in an awesome fundraising 5k walk/run at the Miami ZOO!!! As most of you know, he has a genetic disorder called Fragile X Syndrome. So this year the most rewarding and heart filling gift I could ask for would be for your support….My goal is to raise $1000 to support FAMILIES FOR FRAGILE X, the non-profit organization my amazing sister and momma of Calincito, Vanessa, created alongside other amazing families here in Miami.
For those of you who have never heard of it, Fragile X Syndrome (FXS) is a neurological disorder, and is the leading inherited cause of cognitive impairment and the leading known genetic cause of Autism. In addition to developmental delays, individuals with FXS struggle with a variety of sensory and behavioral difficulties as well. While there is not currently a cure for FXS, there are a few drugs currently in clinical trials that are proving to GREATLY improve many of the more troubling symptoms of FXS, and SIGNIFICANTLY improve the lives of the individuals and families that are struggling with this difficult disorder.
I LOVE YOU ALL AND THANK YOU FOR CELEBRATING MY BIRTHDAY AND MY PRECIOUS CALINCITO!
http://familiesforfragilex.com/
From my sister Vanessa (mamma of Calincito):
“When Calincito was first diagnosed, our worlds collapsed. We were scared, confused, heart broken and desperate for information on how to best help our little boy. After we made it through our initial stages of shock and mourning, with the amazing love and support of our friends and family, we picked ourselves up, and began our life-long mission of helping our son develop the skills and tools he needs to thrive and enjoy life to the fullest. We focused on getting him the supports that he needed both at home and at school, we changed how we planned our daily and leisurely activities so that all would go smoother, and most importantly, we surrounded him with love and acceptance. We are grateful that today Calincito is a happy, energetic, and loving 11 year old boy. He has eyes that twinkle and a smile that lights up any room. His three little brothers, Santiago, Nicolas, and Alejandro love and support him and are becoming the best advocates that he could ask for!
Ten years ago (just after Calincito's diagnosis), we along with the help of my amazing little sister, Tina Chartouni-Calle, and a few other affected families, started a foundation called Families for Fragile X, in order to increase awareness of this disorder, support families affected by it, and raise money for research to find better treatments and maybe even a cure for FXS. “
http://familiesforfragilex.com/
Organizer
Sandra Chartouni
Organizer
Miami, FL
