P.O. Box 6291, Spartanburg, SC 29304

Newsletter - Spring 2015

Happy 2015!

In August 2006, a small group of families gathered in Chicago Illinois for the 1st annual Arthrogryposis Conference. This year we are very excited to be celebrating our milestone of ten years and we are looking forward to celebrating with everyone at AMCSI's 10th Annual Arthrogryposis Conference in Jacksonville, FL on July 1-4, 2015.

We are so grateful for your membership and support. You are making the vision of arthrogryposis awareness and support much more possible. We are immensely thankful for your support and encouragement. We appreciate every donation, kind word, and time given to AMCSI over the past ten years. We look forward to the next ten plus years with our families!

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

With a condition so rare that only one in 3000 babies born have this neuromuscular disorder it's easy to comprehend how alienated anyone with arthrogryposis multiplex congenita (AMC) must feel. Through the hard work of one mother's vision and an army of members, the AMC support group has helped bridge the gap with the power of the internet. It is not only the group's mission to provide and encourage a greater understanding and awareness of this condition, but also to provide a support system. To help those that have felt all their lives an outcast or alone, meet others who have lived that same life, to meet other families who have the same concerns and to provide a resource of information.

But meeting on-line is not enough. It's hard to explain to a mom exactly how another mom has taught her child to sit up without the use of his arms, or how one child learned to stand. What so many people take for granted: the ease of walking, typing, eating and breathing those with AMC have had to struggle to adapt to this world. Our conferences solidify that bridge and strengthen the bond of our AMC family. Once a year we come together, bring professionals, doctors, physical therapists, occupational therapists, provide workshops and invite people throughout the world to learn, share, laugh, cry and grow.


10th Annual AMCSI Conference:
July 1-4, 2015
Jacksonville, Florida, United States of America

Who is Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI)?
AMCSI is a nonprofit organization created to provide information and support to those affected by arthrogryposis multiplex congenita. AMCSI welcomes not only families, but also those in the medical community.

What is the Annual AMCSI Conference?
The Annual AMCSI Conference provides an opportunity for people affected by arthrogryposis multiplex congenita to gather and exchange ideas and support. During the three-day event, families and medical professionals learn from experts regarding "best practice" in the treatment of arthrogryposis multiplex congenita.

Where is the 2015 Annual Conference?
Jacksonville, Florida

What does it cost to register?*
Adult Members: $25; *Late $30
Adult with AMC: $10; *Late $15
Child: $15; *Late $20
Child with AMC: $5; *Late $10
*Late fees after May 31.

Adult Non-Members: $35; *Late $40
Adult with AMC: $15; *Late $20
Child Non-Member: $20; *Late $25
Child with AMC: $10; *Late $15
*Late fees after May 31.

*Fees are per person for the three-day event. Meals, lodging, and transportation are at the attendees' expense.

Calling All Volunteers!!!!

AMCSI is currently 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.

Volunteers are needed in the following area:
- Financial Committee
- Information & Research Committee
- Fundraising Committee
- Administration

Open Board Positions:
- Member At Large

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!

It is a beautiful yet amazing story about how we found out about AMCSI. I went to a Paul Mitchell Hair Academy about 14 years ago in Salt Lake City. I still keep in touch with many of my west coast friends from hair school. When Jax was a year and a half old one of my dearest hair school friends contacted me and said that she was pretty sure one of her clients had a son with the same condition as Jax. She put me in contact with that incredibly lovely woman who opened her heart and soul up to me. That woman that I talked about was Amber Evans, an Arthrogryposis mom in Salt Lake City, Utah. Becoming friends with her really did change our lives, because it was how we found out about AMCSI, and how I found the online support group, and to her we will be forever grateful.

What is the best part about being a member of AMCSI?
The best part of being an AMCSI member is feeling a part of a family that is so much larger than anyone can imagine. You get to interact with people all over the country and feel support, compassion, and love. You instantly can connect and not have to explain your situation. It is a beautiful sense of belonging and feeling safe enough to let down your guard.

What is the biggest challenge about living with or with someone with arthrogryposis?
The biggest challenge with living with a child with arthrogryposis is remembering to slow down, constantly getting creative with adaptations and modifications, being patient, and remembering they are more frustrated than we can ever understand with how much more challenging everything in life is for them.

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true?
I definitely know that these disabled kids and adults want to be treated exactly the same. They don't want pity, or to be talked down to. Give them eye contact and treat them just like your neighbor next door. Don't label them as handi-capped, or special needs. Call them by name and if any use the term arthrogryposis. No child or adult should ever have to have a label put on them that has a negative connotation to it.

Quick! List the first three fun facts about you or your AMCer that pop into your head...
The first three fun facts that pop into my head about my AMCer are: determined, full of life, loves to explore.

Complete the following sentence: Arthrogryposis is... Arthrogryposis is humbling, life changing, and provides daily perspective which has changed our family's life. It has strengthened our family unity, and taught us to love unconditionally, to be grateful and to have great compassion. We are so blessed to have Jax in our lives.

Christina graduated from Rhode Island College with a Bachelor's Degree in Psychology with a minor in Sociology, and is now continuing her education at Salve Regina in the Master's Program for Rehabilitation Counseling. Previously, Christina Battista was a Peer Navigator at RI Parent Information Network, and also worked as the co-coordinator of the RI Developmental Disabilities Council's Cross Disability Coalition. Christina is also a board member for the Rhode Island Statewide Independent Living Council and enjoys motivational speaking. Christina found AMCSI many many years ago through AVENUES. Since then she has found some wonderful people.

What is the best part about being a member of AMCSI?
Getting to share the accomplishments, fears, milestones and everything in between with my AMC family.

What is the biggest challenge about living with or with someone with arthrogryposis?
To me I feel there are no challenges. Yes sometimes there is a "different" way of doing things, but truly living with AMC or other disability is a mindset.

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true?
I think there is a notion at first when meeting someone who has AMC that the person cannot live on their own or perform other typical/"normal" day to day life activities. I think once a person gets to know an AMCer they realize there are no boundaries.

Quick! List the first three fun facts about you or your AMCer that pop into your head...
I love chocolate, I collect piggy banks, and I love to dance!

Complete the following sentence: Arthrogryposis is... Arthrogryposis is a part of me, it does not define me.

(By mom, Deborah Dangay): When Gabby was born in August 2001, I had never heard the word "Arthrogryposis." During her first few days in the NICU, we heard that she was unlikely to live and that she would never walk. That she would probably never eat on her own, sit up by herself, even breathe for herself. That the future was a bleak and scary place. After a few days, the doctors told us she had Arthrogryposis, and I set out to learn as much as I could about the condition. Nevertheless, I felt alone, in over my head, and uncertain about Gabby's future.

I had heard about AMCSI and conferences for AMC families, but we did not go to one until 2011. Gabby and I went, not knowing what to expect. As we waited nervously to check into the hotel, we were greeted by another family and made to feel welcome. The next few days were a blur of excitement and warmth as we met other families, sat around in the hallways comparing surgeries and treatments, and were able to relax in the knowledge that we were no longer alone. We couldn't believe we waited so long to go to a conference! Now we wouldn't miss them for anything. Gabby and I love connecting with our AMC family on Facebook and at mini meet-ups, and I rely on other parents for advice and information. In short, AMCSI has become a vital and rewarding part of our world. Truly nothing short of life-changing!

(Answers by AMCer, Gabby Dangay):
What is the best part about being a member of AMCSI?
To me, the best part about being a member of AMCSI is being able to go to the conferences and mini meet-ups and to meet people with similar stories.

What is the biggest challenge about living with or with someone with arthrogryposis?
I think the biggest challenge is having to learn to do everyday things in my own way. For example, if I drop something on the floor, it is harder for me to pick it up and I have had to figure out the way that works best for me. It is also difficult to deal with the surgeries and extra medical care that go along with Arthrogryposis.

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true?
There is a stereotype that people with disabilities deserve pity, and it's not true. We have lots of skills and talents, despite our differences, and our lives are just as full as anyone else's. We don't need to be pitied!

Quick! List the first three fun facts about you or your AMCer that pop into your head...
I speak French fluently. I love to bake, and I make really good cookies (which makes my brothers very happy!). My favorite sport is snow skiing.

Complete the following sentence: Arthrogryposis is... a challenge at times but hasn't kept me from doing the things that I love.


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!
- 2014 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 email Bonnie Sawatzky.

SoCal AMC Mini Meet-Up | Saturday, March 28, 2015 | 12pm - 4pm
- Refer to website for details: https://www.facebook.com/events/434706910019960/

18 and over AMC Mini Meet-Up | Saturday, April 18, 2015 | 6pm
- Refer to website for details: https://www.facebook.com/events/1545078019078254/

Virginia Mini Meet-Up | Saturday, April 25, 2015 | 11:30am - 5pm
- Refer to website for details: https://www.facebook.com/events/1544467345820230/

Ohio Mini Meet-Up | Saturday, May 16, 2015 | 11am - 5pm
- Refer to website for details: https://www.facebook.com/events/319111918276731/

South Carolina Mini Meet-Up | Saturday, May 30, 2015 | 11am
- Refer to website for details: https://www.facebook.com/events/788357121234391/

2nd Annual AMC Miles Matter Family 5K | Saturday, June 27, 2015 | 8am
- Refer to website for details: https://www.facebook.com/events/1504115783152401/

DC Mini Meet-Up | Saturday, September 19, 2015 | Time TBD
- More information coming soon.

4th Annual Texas AMC Event | Saturday, October 3, 2015 | 9am - 5pm
- Refer to website for details: http://www.amcsupporttexas.org/#!projects/c21kz

Arthrogryposis Support Group Hosts 5th 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.


Would you like to see your artwork on a t-shirt worn by hundreds in our AMC family? If you answered yes, then we need you!

We are currently accepting t-shirt design submissions for AMC Awareness Day 2015. Your design MUST include the following:

- Text that reads "Arthrogryposis Awareness Day" or "AMC Awareness Day" along with the date "June 30"
- AMCSI's official footprints seal (download here) somewhere on the image

To submit a design, send an email to Ani at anisamargian@gmail.com. Deadline is April 15, 2015.

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 Thursday!
8pm EST and 8pm PST

You can now chat on mobile devices!

Be sure to check our AMCSI Facebook page for updates on additional chat dates and times.

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

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