I never imagined how much this organization would change my life. My grandson has arthrogryposis and before he was born, we had never heard of it. We attended our very first conference when he was 4 months old and make a point of planning for it every year. I am now a lot more involved, but will never forget that very first year. Our AMC family has made a huge difference in our lives and the life of my grandson. I have made friendships that will last a lifetime and most important, my grandson knows he is not alone.
Review from Guidestar
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.
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.
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.
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!
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. :)
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!!!!!!!
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.
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.
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!
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.
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.
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.
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.
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!
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.
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.
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!
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!
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.
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!
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
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 have watched AMCSI grow into a non profit over the years from the small informal group it started as. It began as a support group with online forums and has grown immensely over the years providing outreach to new families receiving the diagnosis, parents of children with AMC, and to adults with AMC from various parts of the globe.
AMCSI provides a wonderful way to connect with others whether you are a new expecting parent, parent to a child with AMC, or an adult looking to connect with others that understand where you have been or what you are going through. Our "family" connects through the free online support forums and through the annual conference which is a wonderful time to network and learn about current treatment options, make new friends, meet old ones, and to receive support. I am very proud to be a part of this growing organization as it continues to bring support to AMCers, educate the public and medical field, and bring awareness to the public of what arthrogryposis multiplex congenita is.
My daughter was diagnosed with AMC several months before she was born. We had never heard of her condition and couldn't even pronounce it.
Because of the volunteers at AMCSupport.org, we changed from two terrified (and emotionally devastated) parents-to-be to educated and prepared parents. These complete strangers called us "Family" and patiently prepared us to be great parents to our sweet girl. If it weren't for this group of people, we would have settled for inferior treatment, thinking it was our only option. This is the greatest non profit in the world and it is made up of the best people in the world.
I love AMCSupport.org and I love all the people that make it what it is.
Best organization ever. Period. I won't be the only glowing testimonial so I'll keep it short. This organization has helped encourage and support me through the worst trials of my new life with a very special daughter. There were times I was at my worst and a word from a member put me to rights. I would not be as confident or happy today without them. My daughter stood for the first time after a surgery suggested to me by a board member. We were told she never would. Then after several ideas about physical therapy were shared she started self-feeding and using her arms more. Love this group!