BENEFITING: PRADER-WILLI CALIFORNIA FOUNDATION
ORGANIZER: PRADER-WILLI CALIFORNIA FOUNDATION
EVENT DATE: Oct 09, 2016
We've been involved with Prader-Willi California Foundation since Ryan was diagnosed at less than 2 weeks old, and attended our first event when he was just 2 months old. It was our first time meeting other families who understood what we were dealing with; those families, and PWCF have become invaluable to us and they have been there to guide and support us as we navigate the world of Prader-Willi syndrome.
It's devastating to hear that your child has a rare disease (only about 1 in every 12,000 - 15,000 have PWS); you feel alone and lost. That's why Prader-Willi California Foundation (PWCF) exists - to help families navigate the unexpected journey of PWS. PWCF is the ONLY organization in California that is solely dedicated to providing families and professionals the tools they need to support their loved one or patient with PWS. PWCF helps families get appropriate therapies, medical care, and educational services. PWCF provide training at schools, residential facilities, and work programs. PWCF funds PWS specialty medical clinics in California and issues grants to PWS group homes. PWCF runs the only camp in California that specifically serves people with PWS. PWCF educates parents, families and professionals with our quarterly newsletter, an annual education conference and other training events. PWCF lets families know they are not alone, that while there is no treatment for PWS yet there are strategies that will help their child maximize his potential and improve his quality of life as well as the quality of life of their whole family. PWCF changes lives and saves lives every day.
This will be Ryan and Dan's first 5K - all three of us our proud to raise money for this important cause and an organization that has been invaluable to us.
Any donations, large or small, are appreciated and go so far in helping families like ours. And of course if you want to join us for the walk that would be great too!