AMCSI runs amazing conferences that help my daughter, who has AMC, connect with other individuals just like her. AMCSI has helped us not feel so alone on our journey with AMC. We have real "AMC Family" because of the work of this amazing nonprofit.
I never imagined how much this organization would change my life. My grandson has arthrogryposis and before he was born, we had never heard of it. We attended our very first conference when he was 4 months old and make a point of planning for it every year. I am now a lot more involved, but will never forget that very first year. Our AMC family has made a huge difference in our lives and the life of my grandson. I have made friendships that will last a lifetime and most important, my grandson knows he is not alone.
Review from Guidestar
Truthfully I am not only just a volunteer but a client served as well. I started out as a client served and continue as one but also I volunteer in moderating the chat that we hold every week online. The people I have met through this support group, AMCSI, have become my family. Without them I wouldn't be able to ask questions from the people who have been there and done that and I couldn't bond with the mothers and fathers who are going through it now or will be going through it soon. We are a family, we are friends. Two years I spent alone (besides my family) doing my best to flounder through therapies and surgeries and AMCSI offered up their memebers to help us through the hard times and find people who would share our small triumphs.
Previous Stories
My son's condition was unknown to us so we were surprised at his birth about all the differences he had. When we found out that it was Arthrogryposis we started looking into things. I had even did a search trying to find support groups. I came up empty handed, but then a little before he had turned 2 yrs old I decided to look again and this time I must have put the right wording in because up came AMCSI. I had never felt more relieved in my life.. For almost 2 yrs I felt alone and then there it was my light to guide me through the tunnel. Everyone has been so wonderful and accepting and helpful. Having others who understand you is quite a wonderful feeling and I'm glad that I found AMCSI in that search.
When my son was diagnosed with AMC I immediately searched online to find some answers about why this happened and what I needed to do next. I came across amcsupport.org and was quickly greeted by others and welcomed onto the forums. I found answers to many questions and loads of support from others dealing with the same things. I was able to go to a convention and meet people of all ages affected by AMC. It was incredible! It was then that I knew my son was going to be ok.
