Walk, Roll & Run for Rett

Take time to read this letter that I got a few days ago from Ate Pam Roman, the mother of Julia who is suffering from Rett syndrome:

Dear Friends,

As you know, our daughter Julia has Rett Syndrome, a devastating neurological condition which is still unknown to so many.  Over the years, you have seen me advocate for her. Last year we started a  support group called Rett Syndrome Philippines to bring Rett families together, provide support and advocate for all the girls and women with Rett Syndrome. Rett Phils. is a member of The Philippine Society for Orphan DIsoders, Inc (PSOD), a non-stock, non-profit organization dedicated to help kids with rare disorders. Rett Phils. is not a big group to attract potential sponsors and fundraisers. Yet every day, more and more people are coming forward to help us make a difference in the lives of our girls.

KCAT CAN: Silent Angels

October is Rett Syndrome Awareness Month, Let us be aware, be informed & be inspired with ate Pam & Julia's heartwarming story.

Silent Angels
by Maria Kathrina Lopez Yarza 
October 24, 2011

Girls like Julia are called ‘silent angels’ because they cannot speak. These angels need us.

Julia Roman was born on December 21, 2000, and like all newborns, she was a perfectly healthy and beautiful baby. But on her seventh month, things started to change.

RARE RUN 2010 Ala Eh!

I got this from Pam Mayo-Roman on Facebook..

Calling all families, friends and running enthusiasts! It's time to run, have fun and celebrate with us the birthdays of Julia and Vince through a FUN RUN called RARE RUN ala EH! on Dec 18, 2010.This is a special event that aims to raise funds for the benefit of kids with rare disorders like Vince and Julia. Proceeds will go to the Philippine Society for Orphan Disorders, Inc (PSOD) and Breathe Initiative (BI)