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25 Reviews
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August 10, 2012

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August 10, 2012

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.

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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

June 22, 2011

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June 22, 2011

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.

The Great!

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

support and guidance for my son.

Ways to make it better...

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

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

June 22, 2011

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June 22, 2011

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!

The Great!

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

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

Ways to make it better...

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

none

June 22, 2011

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June 22, 2011

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.

Photos

The Great!

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.

Ways to make it better...

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.

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?

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

June 17, 2011

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June 17, 2011

This support group is my extended family for my daughter. I do not know what I would do without the support and guidance we receive from them. They are our large extended family from around the world. AMC is not very known not only to special needs families, but unfortunately also many physicians. It is vital that we spread the word and raise awareness about AMC so that a family may be able to improve the quality of life their child may be living.

Photos

The Great!

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

How much more informed I became on AMC. I was amazed by how much I "didn't" know until I met everyone. I was able to find doctors that specialize in AMC kiddos, ideas on specialize equipment, splinting, etc. To find out that there is another child in the world just like your child...and that we weren't alone.

Ways to make it better...

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

Absolutely nothing. Continue to strive to grow the organization and raise awareness. AMCSI is awesome!

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?

When my daughter was first born, and finally diagnosed with AMC at age 5 mths, I began researching on the internet for her symptoms. At the time of my daughter's birth, doctors did not know what AMC was. One late night while sitting up with my daughter, I came across a link to the support group. It was a huge life changing experience, and has been ever since. I don't know what I'd do without them.

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

How to increase the quality of life for my daughter by far!

When was your last experience with this nonprofit?

2011

May 3, 2011

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May 3, 2011

AMC Support Inc is the most wonderful thing to happen to our family and our diff-abled son. We wouldn't be where we are today without them. The information that is shared, the shoulders to lean on, the encouragement, I don't know what we'd do without them. The yearly conferences are amazing. It's so wonderful to meet so many people that are "just like us". Other children for my son to meet that are just like him, other parents who are going through the same thing. It's always a good time. Truely, we would not be where we are today with them.
THANK YOU AMCSI! From the bottom of my heart, I can't say thank you enough for all you do!

The Great!

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

how much more informed I am! There are doctors and treatments and therapy equipment and techniques that I would have had no idea about had it not been for AMCSI!

Ways to make it better...

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

Honestly? Nothing, everyone is fun, open, encouraging, informative. Have never had a bad experience with anything, can't wait for the next AMCSI conference to see everyone again!

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?

Our peditrician found it and told us about it

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

The ENTIRE way we live with our son. Honestly. I had no idea about standers and Dr. VB and therapy tricks and techniques that I learned from this group. Truely thankful always.

When was your last experience with this nonprofit?

2011

May 3, 2011

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May 3, 2011

In 2005 I came in contact with Ani, little Abby's Mom.(Abby is the child that inspired amcsupport.org) Through emails and phone calls, I heard Ani talk about her "dream"... A Non Profit Support Organization for families affected by arthrogryposis. At the first Arthrogrposis Conference in Chicago IL2006, I was able to meet Ani, Abby and many other families. Right then and there I saw the need for Ani's DREAM...
So I went home, teamed up with a few others and worked many hours to make her dream come true! In 2007 we became an official Non Profit organization! (501(c) (3)
Through the past few years, I have meet many families from around the world. We have laughed, cried and shared our lives together. I can never explain excatly what my "AMC Family" means to me and how honored I am to have served as Vice President and now President of this great Organization!

The Great!

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

I know have a huge extended "AMC Family"

Ways to make it better...

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

continue to work towards a greater Organization

April 28, 2011

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April 28, 2011

When my son was born, my family felt completely alone, even many medical professionals had not heard of the rare neuromuscular condition arthrogryposis multiplex congenita. I found the group through a friend when my son was almost 5. It changed our lives. The group has done so much not only for my family,but also for may other framiles across the country and around the world. I have been honored to serve as the Vice President of the Board of Directors, and have recently begun serving as program chair. I volunteer many hours each week to assure that NO other family with a loved one with arthrogryposis feels isolated and alone.

The Great!

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

I have watched it grow from 35 members to well over 500! I have watched the annual conference grow from 100 to 700 attendees in five years!

Ways to make it better...

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

nothing

April 25, 2011

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April 25, 2011

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!

The Great!

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.

Ways to make it better...

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

not change a thing!

April 23, 2011

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April 23, 2011

In January of 2009 I found out my baby had a congenital anomaly. I was given a few possible diagnoses. The day she was born we were given a definitive answer. My daughter had Arthrogryposis Multiplex Congenita. I was so confused and was looking for support. I found amcsupport.org. through an online search engine. Then I found the forums. I asked questions and received an instant answer from Tracey one of the board members.
I have learned so much in the past two years. last year we even went to the 5th AMC convention. I had NEVER met anyone with AMC in person. I was so excited to see what they had to offer. I was able to attend workshops for me and workshops to learn about my daughter's AMC. I must say meeting adult AMC'ers as we call them was priceless. I cannot imagine my life without the AMCSI. If I have a question I know I can go to the forums and get an answer. They have many links that help us find resources in our area. I hope amcsupport.org and AMCSI is around forever. Two years ago I was alone. Now I have been embraced by a wonderful support group.
Thank You AMCSI

The Great!

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

attending the AMC Conference, using the forums and Thursday night chat.

Ways to make it better...

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

expand! They need your help to expand! Please donate!

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?

Online Search

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

Being the best advocate for my child.

When was your last experience with this nonprofit?

2011

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