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Review for Arthrogryposis Multiplex Congenita Support, Inc., Salyersville, KY, USA

Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

The members of the support forums were invaluable as my family researched what AMC was, treatment options available based on what users have done, and showing me how AMCers do things. Providing these resources in such a supportive environment made my family's decision easy to add to our family though adoption a child with arthrogryposis multiplex congentia and confirmed what I already knew, she was my daughter. My daughter has met and made friends with other children with AMC and loves our adult AMCers.

If I had to make changes to this organization, I would...

I would love to see this organization become a household name.

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Role:  Board Member & I have met many wonderful people through AMCSI and their network of support.