Fabry’s disease is a rare genetics disorder that is fatal. Treated people live relatively normal lives. More posts are to come.
Join World Run Day for Fabry Disease Join the National Fabry Disease Foundation to participate in and to support World Run Day to help people the rare genetic disorder Fabry disease to live better and longer lives! World Run Day is November 7, 2010 What is World Run Day? World Run Day was founded to celebrate the sport of running worldwide. Its mission is to broaden and promote the health benefits of running while also encouraging runners to donate to their own favorite charity on this special day. It is a very special international day of running and charitable giving. Runners all over the world participate in local running events in groups or individually in organized running events in various cities or on their own chosen courses. We are encouraging support to the National Fabry Disease Foundation on World Run Day to help us to provide critical physician and family education programs to increase recognition and diagnoses of our severely under-recognized disease, and to provide support and assistance to families with Fabry disease in need. To participate as an individual go to www.runday.com and select “Click here to Register” at the top center of the page. To register as a group select the GROUP EVENT DISCOUNT LINK.
Thw world run day which included the run for lysosomal disorders and Fabry disease occured on November 7th. The event raised a mere $395 dollars for Fabry’s. Next eyar this will need to improve. I will be working to get various groups involved including my church for 2011.
