In 2005 I came in contact with Ani, little Abby's Mom.(Abby is the child that inspired amcsupport.org) Through emails and phone calls, I heard Ani talk about her "dream"... A Non Profit Support Organization for families affected by arthrogryposis. At the first Arthrogrposis Conference in Chicago IL2006, I was able to meet Ani, Abby and many other families. Right then and there I saw the need for Ani's DREAM...
So I went home, teamed up with a few others and worked many hours to make her dream come true! In 2007 we became an official Non Profit organization! (501(c) (3)
Through the past few years, I have meet many families from around the world. We have laughed, cried and shared our lives together. I can never explain excatly what my "AMC Family" means to me and how honored I am to have served as Vice President and now President of this great Organization!
When my son was born, my family felt completely alone, even many medical professionals had not heard of the rare neuromuscular condition arthrogryposis multiplex congenita. I found the group through a friend when my son was almost 5. It changed our lives. The group has done so much not only for my family,but also for may other framiles across the country and around the world. I have been honored to serve as the Vice President of the Board of Directors, and have recently begun serving as program chair. I volunteer many hours each week to assure that NO other family with a loved one with arthrogryposis feels isolated and alone.
I have watched AMCSI grow into a non profit over the years from the small informal group it started as. It began as a support group with online forums and has grown immensely over the years providing outreach to new families receiving the diagnosis, parents of children with AMC, and to adults with AMC from various parts of the globe.
AMCSI provides a wonderful way to connect with others whether you are a new expecting parent, parent to a child with AMC, or an adult looking to connect with others that understand where you have been or what you are going through. Our "family" connects through the free online support forums and through the annual conference which is a wonderful time to network and learn about current treatment options, make new friends, meet old ones, and to receive support. I am very proud to be a part of this growing organization as it continues to bring support to AMCers, educate the public and medical field, and bring awareness to the public of what arthrogryposis multiplex congenita is.