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  

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.

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

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1 previous review
Rating: 5 stars  

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.

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.

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.

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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Rating: 5 stars  

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.

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

support and guidance for my son.

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

n't. The BOD, volunteers, and parents are doing a great job.

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Rating: 5 stars  

AMC gave us HOPE when we were lost and had NO answers.....we absolutely LOVE them and we are CHANGED forever because of them.....you can read more about our story at http://graceemma.blogspot.com/
They have given us so much, now its time to give back!

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

finding the right doctor who could help our daughter.

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

not change a thing! They are perfect just the way they are!

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