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:
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.
The Malate Catholic School Alumni Association Batch '75 and '80 have decided to put together a Fun Run entitled, "WALK, ROLL AND RUN for RETT" on April 22, 2012 at the CCP COmplex. They are running for our girls who cannot run. They are running for awareness and running to raise funds for Rett SYndrome Philippines. We need all the help we can get. We are sadly under-funded and girls like Julia require 24 hour care and will continue to require that until a cure is found.
So it is for Julia and all the girls with Rett Syndrome that I ask you to spread my message and be involved. You don't have to be a runner. "WALK, ROLL and RUN for RETT" is for everyone! There are also lots of ways that you can help. You or your business can donate prizes and materials such as shirts, caps and refreshments for the event. You can also offer help by volunteering, sponsoring your company's services or by making a monetary donation. Every little bit helps and every offer is welcome!
Please join us in this worthy cause. Most of us have been enormously blessed. Let’s give back to others who aren’t as fortunate. Let’s run for all the girls with Rett Syndrome and care beyond finish line.
More details to follow soon.
Thanks and Godspeed!
And here it is:
(click photo to enlarge)For your queries, you may contact:
Beng de Vera