This year is the 51st anniversary of the Central California Hemophilia Foundation and it is also our 51 st wedding anniversary. So much has changed in those 51 years and living with a bleeding disorder is so much better than it was 51 years ago. But we still have a long way to go.
Our son was diagnosed with severe hemophilia A at 7 days, when he was one year old we were referred to the UC Davis Hemophilia Treatment Center and he was then correctly diagnosed with type 3 or severe von Willebrand disease.
Did you know that 1 in 100 people have von Willebrand disease? Many of them go undiagnosed and untreated. Did you know that 1 in every 4,500 boys is affected by a bleeding disorder like hemophilia. There are 475 thousand people living with bleeding disorders in the world. Bleeding disorders like hemophilia and von Willebrand disease don't discriminate and people of all races and genders are affected.
I have volunteered with the Central California Hemophilia Foundation for over 46 years and my husband, children, their spouses and our grandchildren are all doing their part to give back to the bleeding disorder community by volunteering at the various events..
There have been many amazing strides related to bleeding disorders, however there is no cure even though the scientists are working on better treatments and eventually a cure.
The funds raised in this walk will go towards improving the lives of children and adults living with bleeding disorders. All funds raised at this walk will stay in this area. CCHF funds things like summer camp for children with bleeding disorders, scholarships, life long learning scholarships, emergency assistance, educational programs, and fun activities that allow families to network with other families.
Thank you in advance for your support and together, we will make a difference.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."