ARTHROGRYPOSIS MULTIPLEX CONGENITA SUPPORT, INC..
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May 3, 2013
My daughter has AMC. Her self esteem has improved because through this support group she has met peers and role models.
I have also met other parents who have had similar experiences through this group. It has been a great support for me and also an opportunity for growth and learning via conferences.
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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
When was your last experience with this nonprofit?
2013
May 3, 2013
AMCSI makes it possible for people with Arthrogryposis and their families to see others that look just like them! Having the opportunity to see and interact with other AMC'ers is amazing! It's such a rare condition that you just don't see it very often.
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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
When was your last experience with this nonprofit?
2013
May 2, 2013
Seven years ago, I had never heard of arthrogryposis. My granddaughter was born with AMC and it changed our world. Without the support and understanding of AMC, our family would have been rocked to the core. This little baby has grown and has become a wonderful child that can adapt to almost any situation. She has gone thru numerous surgeries, castings, braces and splints. Each time we run into a bump in the road, AMC Support has gotten us thru the hard times. They keep us updated with new medical advances, therapies and hardware that our children need. The AMC Support Group is our family.
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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
When was your last experience with this nonprofit?
2013
May 2, 2013
I am the mother of a son with AMC. We knew very little about arthrogryposis when we adopted him at age 5, two years ago. This group stepped up to help us know so much more about this rare condition and connect us with others were already parenting kids with AMC. I find support from this group almost daily. We appreciate the work they do!
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How would you describe the help you got from this organization?
A lot
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2013
April 5, 2013
I am the grandmother of a AMCer. She is now 3 months old and because of this org we are a whole lot smarter and feel a lot more in control. When my grand daughter left the hospital no one had said the word "arthrogryposis" my daughter read it on her discharge papers a few days later. I truly do not know where we would be if not for all the people we have found thanks to this org, including other parents and Gracie's new Doctor Dr. Vb at shriners in Philly. They really have helped change our lives for the better and have given us hope for Gracie's future. Thank you. :)
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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
When was your last experience with this nonprofit?
2013
November 6, 2012
This group has helped me more than anything with my sons condition! I had never heard the word Arthrogryposis before hearing it at an Ultrasound appointment while pregnant with my son. I was terrified and couldn't get much information from the doctor. I went online and this site was one of the first I found and I thank God for that! The families and their support, stories and possitive attitudes have forever changed my life! I don't know what condition my son would be in at this point without all of their wonderful advice and support! THANK YOU!!!!!!!
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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
When was your last experience with this nonprofit?
2012
October 30, 2012
When we were 21 1/2 weeks pregnant with our son Roger, we found out through a "routine" sonogram that our baby had what was believed to be Arthrogryposis. The doctor knew very little and even the maternal fetal specialist had limited knowledge on the condition. We found this support group on-line when a friend searched the term "AMC" and "blessed" and we came across the founder's web page about her daughter Abby and then the group web page. From that moment on, I memorized all the stories and information I could absorb and found hope, faith and a feeling of peace that everything was going to be all right. We have relied heavily on the information and support found within this group of AMAZING people and don't know how well we would be doing without them! Roger is almost three and doing just great! They are so informative by means of sharing every, and I mean EVERY aspect of what can be expected. We are truly indebted to Ani, Theresa, Tracey and Peg, just to name a very few.
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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
When was your last experience with this nonprofit?
2012
October 30, 2012
A few months ago my wife and I were surprised to find out we were pregnant with our 9th child (4th biological - we have 5 adopted). All of our biological children have been healthy, so the news of Declan having Arthrogryposis seemed overwhelming. We knew that termination was never an option, but resources on AMC seemed lacking. AMC Support has helped provide a wealth of tips, knowledge and advice to our family. We are very thankful for this agency and recommend it to anyone looking for resources on AMC.
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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
When was your last experience with this nonprofit?
2012
October 30, 2012
We knew our daughter would have problems before she was born since she did not move in womb and they could not see the base of her spine on ultrasound. After birth and three weeks of test we were told she had Arthrogryposis, not that we'd heard of it before or knew anything about it. Jump ahead 10 years and we stumble upon the AMC Support, Inc. website and annual conference information. We attended our first conference this year, it was eye and heart opening! We found out so many tips, tricks, ideas, inventions, and FRIENDS and SUPPORT. Our daughter discovered she was "not unusual" after meeting and playing with kids of all ages. AMC Support, Inc. is making it possible for parents like me to discover and share all the various aspects of living with a AMC person. Thank You AMC Support, Inc!
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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
When was your last experience with this nonprofit?
2012
October 16, 2012
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.
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Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
April 21, 2011
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.
The Great!
I've personally experienced the results of this organization in...
Finding friends who are in the same situation as we are and can give advice or be an ear to lean on or a sounding board for ideas.
Ways to make it better...
If I had to make changes to this organization, I would...
Make it so it's more widely known so people can know what it's all about.
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?
Internet search looking for support.
What, if any, change in your life has this group encouraged?
Friendships with people who understand me and my child. Help deciding on things from their experiences. Giving me different things to think of and do.
When was your last experience with this nonprofit?
2011
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