P.O. Box 6291, Spartanburg, SC 29304

Newsletter - Summer 2015

Dear past and present Board Members and volunteers,

Thank you so much for volunteering with AMCSI over the years. It has been an amazing ten years!

Thank you for bringing your passion, intellect, insight, experience and resources to the table. Thank you for challenging me and your fellow Board members. Thank you for taking my calls, talking me off ledges and helping me brain storm solutions. Thank you for taking the time to govern our organization appropriately.

I know that it was an "add on" to the many other things that you did, including your career, your family, other volunteer opportunities and your social life. We appreciate that you were willing to serve and I hope we always valued your time and your input.

A special thank you to all the board members and volunteers who individually and collectively impacted my life in ways I cannot express; I will always be grateful. To each of you with whom I have had the privilege to serve, thank you; thank you for your service, your loyalty, your leadership and your guidance.

Donna Carlton, Melissa Dickinson, Mary Beth Eberhard, Maureen Goede, Paul Golembiewski, Dr. Judith Hall, Chris Hartwick, Doris Heckert, Ileana Hernandez, Maggie Howell, Jennifer Keeton, Dante Nelson, Lana Prater, Zak Purdon, Suzanne Rudder, Maria Ryan, Ani Samargian, Michele Schafer, Tracey Schalk, Wendy Sifientes, Dr. Harold van Bosse, Rosalinda (Morales) Weatherly, and Dale Wilson.

A HUGE thank you is also extended to Jeroen Tebbens, AMCSI's Technical Director, and all who have given their time and talents to this organization!

With Gratitude,
Theresa Lucas
President of Arthrogryposis Multiplex Congenita Support, Inc.

AMCSI would like to thank the attendees, presenters, hotel personnel, and conference planning team for making our 10th Annual AMCSI Conference in Jacksonville, Florida, a huge success! This year we had over 600 people attend, and it is amazing to see how much we have grown in ten years. When planning the conference, the team strives to find presenters to provide current information regarding medical treatment as a highlight of the conference; however, the true purpose of the conference rests on the foundation of AMCSI - Support. We hope that we encourage opportunities for families and individuals make personal connections and form life-long friendships. It makes our hearts happy when we see those encounters between attendees. You can view some of these moments below.

Thank you once again, and we hope to see you in Tulsa, Oklahoma, July 6-9, 2016!

My name is Carlos Rich, I am a 37-year-old adult with AMC. I was born in Guatemala and adopted at age 12. I am the oldest of four. I attended Kansas State University and earned a bachelors degree in Social Work. I live in Kansas, where I own a cleaning business.

I've always been curious about finding and knowing folks that were affected in the same way I am. I have had only limited information about AMC and never met anyone like me until June of 2014 when I met my first AMCer at age 36. I learned about the AMC conferences that day.

I decided to attend the AMC Conference in Jacksonville this summer with my folks. I did not go into it with any expectations, but was nervous, curious, and scared all at the same time. As a 37-year-old, I have had lots of great experiences, but attending the conference in Jacksonville has forever changed me. It was inspiring, educational, fun and invigorating. The connections I made with so many folks and the friendships I formed, I believe will last a lifetime. Knowing I have the AMC family motivates me to continue my quest in life and it has boosted me to search beyond what I currently know.

What is the best part about being a member of AMCSI?
To know I have a support system out there and having a family reunion every year.

What is the biggest challenge about living with or with someone with arthrogryposis?
Joint pains and not being able to do pull ups!

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true?
That we are limited by the way we look.

Quick! List the first three fun facts about you or your AMCer that pop into your head...
I'm funny, outgoing, and I love to laugh and make others around me laugh!

Complete the following sentence: Arthrogryposis is... an interesting and unique experience, challenging, attention getting (sometimes unnecessarily) and a blessing now that I have my own tribe!

My name is Jennifer Fecowycz, mom to Oscar who is 9 months old and was born with AMC amyoplasia in all 4 limbs. We live in New Jersey and Oscar has 2 older sisters, and 1 older brother. We found AMCSI through the suggestion of a friend. Oscar was diagnosed with AMC when I was 13 weeks pregnant. A dear friend of mine learned about his condition and happened to have a friend from the previous city she lived in that was involved with AMCSI. As soon as I read her email I googled AMCSI and have found a ton of hope and inspiration and support through the website and the FB groups that AMCSI manages.

What is the best part about being a member of AMCSI?
The best part about being a member of AMCSI is knowing that you are not alone. There is power and comfort in numbers. AMCSI is a great network that I can ask silly questions and tips or ideas that I am too embarrassed to ask Oscar's doctors, or when I have been unhappy with the doctors' answers. I have learned so much from all of the individuals with AMC and their families.

What is the biggest challenge about living with or with someone with arthrogryposis?
The biggest challenge about living with someone who has arthrogryposis is the unknown. Oscar is still very young and what he will be able to do and will need help with are yet to be determined. He is progressing more and more every day, which is a reason to celebrate, but I don't want to become so thrilled with all he can do, that I am blind sided in the future by something he may not be able to do. So I guess in a nutshell it is difficult to stay positive and optimistic, while also being realistic.

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true?
The stereotype that I have come across the most that I wish others would realize isn't true is that all disabilities cannot be fixed. Since Oscar is so young everyone keeps asking if he is getting "better". While he is gaining more passive range of motion every day, and figuring out how to interact with his surroundings like other babies his age, he will never be "all better", he will forever have challenges and need therapies that people without a disability will never have or need. So while yes, he is improving, he will never be completely cured.

Quick! List the first three fun facts about you or your AMCer that pop into your head...
Oscar has the biggest smile, he loves to eat bananas, and his laugh is infectious!

Complete the following sentence: Arthrogryposis is... Arthrogryposis is something I wish I didn't have to know about, but am so happy that I do. Oscar having AMC has been such a blessing in disguise and he reminds me constantly to smile and be happy and celebrate the small victories. While arthrogryposis is difficult, it is also beautiful!

On October 26, 2005 my baby Angel, my first baby, my blessing, my AMCer was born in the island of Puerto Rico. I was then full of illusions as a new mommy. My baby boy was diagnosed with AMC as soon as he was born. He was immediately treated by different specialist who gave all their attention to us. This came as a surprise for me since I never knew about this condition before my child was born. All I was told during my pregnancy was that my soon to be born baby was coming in a bridge position and I had to have a C-section. As soon as I held my baby in my arms I knew I had a special path to walk. I felt a blessing that turned my life around in seconds. I fell in love for the very first time. As expected I had many doubts, many questions to be answered, and a lot of research to get done. In one of these research activities I found a webpage dedicated to a little girl named Abby. This was the first time I read about AMC through the story of a beautiful baby girl that was born with the same condition as my son. I found out about her caring parents who made this webpage to become a powerful tool for my questions, my doubts and at that very second I felt no longer alone on this. This webpage guided me to the people I needed to meet, the AMCSI team.

It has been 10 years of dedication to my Angel; he has overcome most of the goals that specialists and our family have expected of him. He has become an independent and happy boy with a lot to give. I am very thankful to the AMCSI team for being part of our lives since day one.

What is the best part about being a member of AMCSI?
Everyone has their own story, but at some point in time it becomes everyone's story as well, and being able to share my personal story with other people that can understand and that can relate to mine makes me feel understood.

What is the biggest challenge about living with or with someone with arthrogryposis?
My everyday challenge since the first year or before is to let him see the world with his own eyes. To let him be. He has shown me in every step of the way that he can handle it very well, and that he has it under control.

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true?
Being born with different abilities will not make anyone not want to achieve the same things in life than many other people that are born without a disability.

Quick! List the first three fun facts about you or your AMCer that pop into your head...
My AMCer loves math and he's very good at it. Perfect grades at school. He loves break dancing and is very outgoing and independent.

Complete the following sentence: Arthrogryposis is... not a disability, but instead different abilities to face life challenges.

I am a college student at University of Massachusetts who is living in the dorm. I am studying Liberal Arts and received associates of Web Design and Media Arts. Also I am an athlete who likes to be active by running in the races like 5K races. I found AMCSI from local AMC mini meet up at Massachusetts because I want meet others AMCers are just like me and help younger AMCers and their parents by telling my stories as College student and being independent.

What is the best part about being a member of AMCSI?
The best part being a member of AMCSI is going to AMC convention and meet old and young AMCers to share same interests. My favorite part was telling my story to front of other AMCers at closing ceremony at 2015 AMC convention.

What is the biggest challenge about living with or with someone with arthrogryposis?
When I was young, I had hard time to speak and had to use sign language signals to communicate but today I can speak normal just like I did at the AMCSI Conference!

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true?
Even though I have AMC, I do not give up on anything and always try anything. Never give up!

Quick! List the first three fun facts about you or your AMCer that pop into your head...
I am strong, active, and always try my best!

Complete the following sentence: Arthrogryposis is... a disability but it does not stop me on anything and will try anything and don't care how long it will take, I will get there.


BENEFITS of joining AMCSI:
- Discount on conference fees!
- Access to AMCSI's annual & public meetings!
- Voting rights!
- Ability to apply to serve for a vacant spot on Board of Directors or other committees!
- Members receive seasonal newsletters and monthly spotlights! Members are able to be featured in both and share their stories with the community!
- AMCSI calender magnet!

Please go to http://www.amcsupport.org/becomeamember.html to become a member today. Memberships begin at $10.00 per fiscal year.

Arthrogryposis Multiplex Congenita (AMC) is a condition where primarily the limbs have significant limitation in motion at birth. Many individuals undergo many surgeries and extensive physiotherapy to improve range of motion. Physicians and researchers from around the world agree that there is still little known about what treatment works best for long term function. We propose the largest international study to determine what happens to the long-term health (>19 yrs of age) of individuals living with AMC, using an online survey and an optional additional 30-minute telephone interview. We as researchers from the University of British Columbia in Vancouver, Canada are very interested in learning more about the natural progress and best therapies for various types of AMC.

Purpose of this study: To determine the long term health outcomes of individuals born with arthrogryposis.

You may be eligible to participate if you:
- Have been diagnosed with arthrogryposis
- Are 19 years of age or over
- Can read, and write in English (and speak English if you wish to take part in the optional interview)

What is involved: This study involves filling out a 20-minute online questionnaire about your health. If you wish, you may also participate in a 30-minute optional follow-up interview scheduled at a later date. If you are interested, please email Dr. Sawatzky and she will send you more information and a unique link to the questionnaire.

If you are interested in participating or would like more information, please visit this link.

AMC Family Zoo Meet up | Tampa, FL | Saturday, September 19, 2015 | 7am
- Refer to website for details: https://www.facebook.com/events/124243007924316/

Fall AMC Meet-Up | Fairborn, OH | Saturday, September 19, 2015 | 12pm - 5pm
- Refer to website for details: https://www.facebook.com/events/525761217579609/

AMC Mini Meetup | McLean, VA | Saturday, September 19, 2015 | 11am-4pm
- Refer to website for details: https://www.facebook.com/events/1623447171273655/

AMC Mini Meetup | Mesa, AZ | Saturday, September 26, 2015 | Time TBD

AMC Mini Meetup | Waco, TX | Saturday, October 3, 2015 | Time TBD

AMC mini meet up! | San Pedro, CA | Saturday, October 10, 2015 | 11am
- Refer to website for details: https://www.facebook.com/events/1015831471784566/

AMC mini meet up | Greenville, SC | Saturday, October 10, 2015 | 12pm
- Refer to website for details: https://www.facebook.com/events/1614306385524143/

First Latin American Arthrogryposis Meet-Up!
March 11-13, 2016 in Lima, Peru
Save the date!

Primer Ecuentro Latinoamericano de Artrogriposis!
11-13 de Marzo del 2016 en Lima, Peru
Guarde la fecha!

Arthrogryposis Support Group Hosts 6th Annual Awareness Day

On June 30th families across the globe will be wearing the color blue to honor those affected by Arthrogryposis Multiplex Congenita (AMC). This will be the fifth annual AMC Awareness Day sponsored by Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI), a fully volunteer based 501(c)(3) nonprofit organization that also hosts an annual conference and maintains a free online message board system for these families.

Quick Facts About Arthrogryposis Multiplex Congenita

- Arthrogryposis is defined as multiple congenital (from birth) joint contractures or multiple joints that are stuck in one position and have very little flexibility.

- Arthrogryposis in an umbrella diagnosis, which means that it is part of many other conditions and syndromes. These conditions and syndromes are usually referred to as the type of arthrogryposis. Currently there are 400 identified types of AMC. Amyoplasia, Distal and Escobar Syndrome are the more common types (but they are still relatively rare within the general population). Some individuals never have their type of AMC identified.

- Arthrogryposis is not a newly identified condition. Adolph Otto officially described it in 1841. Literary evidence of arthrogryposis dates back as early as the 12th century. In 1642, a painting entitled "the clubfoot" located in the Louvre, portrays a beggar believed to have a form of AMC, though the specific type is still debated among experts.

- Stretching, various therapies (physical, occupational, speech etc.) and some surgical interventions can help improve someone's independence level and quality of life.

- Most children and adults who have a diagnosis of arthrogryposis are cognitively typical, meaning their IQ scores are normal or above normal. Some people with AMC will have some level of cognitive impairment.

Calling All Volunteers!!!!

AMCSI is always seeking volunteers and board members who are passionate about our mission and are committed to helping us fulfill our vision. We are seeking individuals who are willing to volunteer their time in the best interest of the families we support.

Interested individuals must be 18 years of age or older and be prepared to dedicate at least 5-10 hours of work on average each week. Please contact Ani at anisamargian@gmail.com.

Your involvement in the community is pivotal to AMCSI fulfilling our mission and vision! Thank you for your consideration and excitement!

Bravelets stylish cause jewelry is made to help people be brave during tough times. There are times in all of our lives where we need to be brave - whether for ourselves, for our family, for our friends, or even for a complete stranger. Bravelets bracelets are more than just something to wear on your wrist. They are a symbol of hope, strength and courage. They are designed to help you be brave in the toughest of times.


$10 from every purchase will be donated to Arthrogryposis Multiplex Congenita Support, Inc. Wear a Bravelets bracelet and be brave!

Come chat with us every 1st and 3rd Thursday of the month!
8pm EST

Please visit AMCSI's Facebook page for more information.

P.O. Box 6291, Spartanburg, SC 29304 | amcsupprt.org | bod@amcsupport.org | Follow us:

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