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kdavison

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ARTHROGRYPOSIS MULTIPLEX CONGENITA SUPPORT, INC..
June 17, 2011

This support group is my extended family for my daughter. I do not know what I would do without the support and guidance we receive from them. They are our large extended family from around the world. AMC is not very known not only to special needs families, but unfortunately also many physicians. It is vital that we spread the word and raise awareness about AMC so that a family may be able to improve the quality of life their child may be living.

Photos

The Great!

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

How much more informed I became on AMC. I was amazed by how much I "didn't" know until I met everyone. I was able to find doctors that specialize in AMC kiddos, ideas on specialize equipment, splinting, etc. To find out that there is another child in the world just like your child...and that we weren't alone.

Ways to make it better...

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

Absolutely nothing. Continue to strive to grow the organization and raise awareness. AMCSI is awesome!

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

When my daughter was first born, and finally diagnosed with AMC at age 5 mths, I began researching on the internet for her symptoms. At the time of my daughter's birth, doctors did not know what AMC was. One late night while sitting up with my daughter, I came across a link to the support group. It was a huge life changing experience, and has been ever since. I don't know what I'd do without them.

What, if any, change in your life has this group encouraged?

How to increase the quality of life for my daughter by far!

When was your last experience with this nonprofit?

2011

MY ROLE:
Client Served & Raising my AMC child and spreading awareness to the best of my ability!.