On September 5th, 2014 I will be running, hiking and walking 62 Miles (maybe some crawling too!) to raise awareness of Arthrogryposis...
NOT driving a car, NOT riding a bike, ON MY FEET for 62 Miles, and Yes - All at one time! All I ask of you is a few minutes to tell you about this rare condition, how it affects my family and how you can help me.
My goal is to raise AMC awareness. Arthrogryposis Multiplex Congenita (AMC) means "Multiple Joint Contractures Present at Birth". A joint contracture is a joint that lacks normal range of motion or in other words is stiff or curved. AMC can be part of many syndromes and other underlying conditions. More than 3 joints have to be affected in 2 areas of the body to have a diagnosis of AMC. It occurs in approximately 1 in 3000 births. It is more common than multiple sclerosis and cystic fibrosis, yet we had never heard of the condition on January 7th 2008 when our daughter Grace was born. We didn't know where to turn for guidence until we came across www.amcsupport.org. This was a forum for families affected by AMC. The forums are sponsored by AMCSI. AMCSI is a 501(c)(3) Non-profit charitable organization and funds are needed to support our online forums, for awareness materials and events, to facilitate our annual convention, and to promote medical research.
It takes a lot of motivation to keep moving for 62 Miles. Please donate to our cause, if you are able to, and help keep me running for AMC awareness!!!