Arthrogryposis Multiplex Congenita Support, INC..

Rating: 4.96 stars   25 reviews

Issues: Health, Human Services, Cancer

Location: PO Box 1883 c/o Theresa M Lucas Salyersville KY 41465 USA

Mission: Our Mission: To provide and encourage more understanding and mutual support among anyone affected with the diagnosis of Arthrogryposis Multiplex Congenita (AMC).  To create a higher standard of AMC awareness by means of Conferences, Meetings, and Studies. Our Vision: To provide educational material to new parents, or soon-to-be parents regarding the diagnosis of Arthrogryposis Multiplex Congenita (AMC). To provide a resource of information to the medical field to include but not limited to occupational therapists, physical therapists to assist them in the treatment of a child or person with the diagnosis of AMC.
Target demographics: AMCSI shall not discriminate on the basis of race, national origin, religion, age, gender, gender identification, sex, sexual orientation or handicapping condition. All programs and activities of AMCSI shall be conducted in furtherance of this policy. An open door policy is extended to whomever is interested in or supportive of those with Arthrogryposis Multiplex Congenita. Membership shall be open to: 1 New parents/ expectant parents of a child with AMC; .2. Family/ friends of a child or adult with AMC; .3. Any adult past 18th birthday currently living with AMC; .4. Any person working in the medical field; .5 Public/private school systems; and .6 Any person who expresses an interest in supporting the mission of AMCSI. AMCSI shall conduct an annual enrollment of members but may admit individuals to membership at any time. The membership year shall be January 1 through December 31. Membership will not be prorated for mid-year enrollment.
Geographic areas served: all
Programs: Annual AMC Conferences, Support forums, Chat room, NICU Packets
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Community Reviews

Rating: 5 stars  

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.

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

 
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Rating: 5 stars  

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.

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

 
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Rating: 5 stars  

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.

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

 
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Rating: 4 stars  

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!

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

 
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Rating: 5 stars  

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. :)

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

 
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Rating: 5 stars  

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!!!!!!!

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

 
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Rating: 5 stars  

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.

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

 
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Rating: 5 stars  

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.

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

 
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Rating: 5 stars  

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!

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

 
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Rating: 5 stars  

As a 55 yr. old with AMC who had no contact with other AMC'ers until I was in my late 20's and only for one day. I was overjoyed to have discovered this ORG. It has enabled me to meet hundreds of AMC'ers virtually across the world. I'll be attending my first conference next month and will be meeting many more. The stories shared by these adults and parents of young children, and their kids, have been an incredible inspiration to me. They help me to see how far I have come in my journey with AMC and in turn enable me to light the way for them on the earliest steps on theirs. None of this would have been possible without this amazing ORG. I hope one day there will be no need for such an ORG. Until then, I hope it grows exponentially to envelope many many more in the support, knowledge and inspiration I have come to know and love through their heartfelt mission.

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

Learned more about my condition and come in contact with professionals, Drs and clinicians who have helped me become the best I can be.

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

Work with the corporate sector by creating a speakers bureau to help employers better understand that attitude is everything, and how building on our strengths empowers all of us to reach our full potential, not only as employees, but as members of society.

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?

Yahoo and Facebook

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

See above

When was your last experience with this nonprofit?

2011

 
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