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 3 year old son has Arthrogryposis, and this support group has been wonderful for our family. We have attended two conventions where we were able to meet with hundreds of other families with members who also have AMC. This condition is very rare, so it is vitally important to be as educated and supported as possible - and we have learned to much and have so much comfort in knowing we are a part of this support group and are connected to all the other families.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

This organization has been my saving grace. Last summer, I became the mother of a child with a mild case of AMC. Through this support group, I have had my hope renewed, and many, many questions answered. This group has shown me that children with AMC can thrive, and become well adjusted adults living close to "normal" lives. It has shown me that people with AMC don't have a disability, they have a "diff-ability". AMC'ers can do just about everything a 'typical' person does... they just may do it differently!

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

finding treatments for my daughter and becoming well informed regarding her condition.

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

none

 
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Rating: 5 stars  

I don't even know where to start! AMCSI owns a major part of my heart! My daughter Bailey was born with AMC August 21st 2008, we were un-aware of any complications before birth so when she was born with AMC my Husband and I were very shocked and scared. Doctors were telling us of the thing's she wouldn't be able to do, the affects, the therapies and doctors she would need to see.. etc. It was a very overwhelming expierence and we were very frightened. We found AMCSI through an internet search when Bailey was a few months old and it was the BEST link I could have ever clicked on in my entire life. They took my family in like their own, offered support and most of all friendship. They made us realize that it was not about what Bailey wouldn't be able to do but about what she WOULD be able to do! They squashed our fears and opened our hearts! I couldn't ask for a better organization to be apart of! I'm so blessed to know many warm-hearted people through this support group and I am thankful everyday for them!

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

I talk to several people from this group weekly and we have attended 2 of their annual conventions! The Conventions educated us on things we did not know about AMC, new therapies, bracing, surgery, etc and we use the knowledge in Bailey's everyday life.

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

not change a thing!

 
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