P.O. Box 6291, Spartanburg, SC 29304




Newsletter - February 2017





Dear AMC Family,

Many of you may not know my term as President has ended December 31st 2016. I hope that during my term I have been able to make a positive impact on both the current and future of AMCSI. Thank you for the opportunity to lead and for your patience as I learned with the other board members. This is definitely one experience I will never forget!

My journey in AMCSI wasn't done alone. I was accompanied by a team of dynamic individuals who shared in our successes and learned from our failures.

So I would like to take this opportunity to thank a number of people for their hard work and dedication, and without whom running this organization wouldn't have been possible.

In particular I'd like to thank AMCSI founder, Ani Samargian, for allowing me to be a part of "her dream." For trusting me to put her dream into a reality, for all her and the Board's support and encouragement during my term, and all the members of the Board of Directors for their dedication in serving with me.

I would be remiss if I did not recognize the true heroes of the past years, our dedicated board members of the past along with all of the committee chairs and volunteer members. To Jennifer Keeton for all of the long hours of preparing our nonprofit paperwork, and her work as treasurer. To Rosalinda Morales Weatherly, for her awesome leadership as president the first few years. Michele Schafer, Donna Carlton, Doris Heckart, Wendy Sifuentes, Maggie Howell, Melissa Dickinson, Marybeth Eberhard, Suzanne Rudder, Dale Wilson, Zak Purdon, Tracey Schalk, Harold vanBosse, Maria Ryan, Dante Nelson, Maureen Goede, Paul Golembiewski, Chris Hartwick, Lana Prater, Ileana Hernandez, Summer Braddock, Sara Garver, and Don Barh. Also to all the behind the scenes committee members, Conference, website, financial, NICU packet, etc. There are not enough words to express the thanks and appreciation of these great leaders. For without their passion and undying commitment to devote thousands of hours of volunteer service, we would not have begun this journey of or achieved any of our goals.

But most importantly, my thanks go out to you, the AMC family, for all your support. For without you, AMCSI would not exist. It has been my pleasure to serve you.

In closing, I do have one final request. I ask that each of you pledge your continued support to AMCSI and help our 2017 leaders continue our journey to deliver the success our organization deserves.

As you know, we can do this. But only Together.


Theresa Lucas


Note from Arthrgryposis Multiplex Congenita Support, Inc.:

On behalf of Arthrogryposis Multiplex Congenita Support, Inc., we are thankful to Theresa Lucas for her time and dedication to help fulfill the vision and mission of our organization. Theresa served in a variety of roles throughout her years with us while volunteering for many, many hours behind the scenes and at our annual conference. She had a huge part in securing AMCSI's nonprofit status in 2007. Painting with Theresa continues to be a very important and meaningful part of our annual conference and we hope to see it continue for many more years to come!







The 2017 AMCSI Conference Planning Team (AKA: The Loon Crew), is already hard at work planning this year's event, “Viva Las Vegas!” which will be held June 28 - July 1, 2017, in Las Vegas, Nevada. Registration is expected to open in February/March. Because this event is completely run by volunteer staff, there will be numerous opportunities to help at the conference including support in our AMCSI Store, Silent Auction, and Children's Programming. The amazing ladies that plan each of these important parts of our conference need your help to make them successful. As we continue to grow, we need your help even more. We are excited to return to Las Vegas, and we hope to see you there!

We will release the name of the hotel when registration opens. For planning purposes, the hotel is about 30 minutes from McCarran International Airport - LAS. Cab fare is approximately $60 one way, so it may be cost effective to rent a car or hire a private sedan. The hotel does not provide a shuttle. Room rates are $109 plus tax. Parking is free.

Viva Las Vegas!


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.

AMCSI 12th ANNUAL CONFERENCE INFORMATION

12th Annual AMCSI Conference:
June 28 - July 1, 2017
Las Vegas, Nevada, 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 2017 Annual Conference?
Las Vegas, Nevada, United States of America

CLICK HERE FOR MORE INFORMATION!




The 2016 AMCSI Conference in Tulsa, Oklahoma, was a huge success! The event brought almost 500 people together, including 144 individuals with arthrogryposis, to learn, share, laugh, cry, and grow as one community. There were attendees from five different countries!

Below are a few photos from the conference and we hope to see you in Vegas this summer!




















Ewa is a motivated learner born with Arthrogryposis Multiplex Congenita. Outside of her regular full time position at an insurance company, she recently completed her PhD in Organizational Management. Additionally, she holds has a Bachelor's Degree in Accounting and a dual Master's Degree in Financial Management and Human Resource Management. Aside from school and work, she also tutors high school students in math and teaches them the fundamentals to not only reach, but exceed their potential and will be starting as an adjunct professor in March! In her free time, she enjoys swimming, Zumba, reading, and working towards walking with braces again.

What is the best part about being a member of AMCSI? I love being able to connect with others with AMC. Since being a member, I have met a lot of adults with AMC, as well as many parents of children with AMC. It's really rewarding being able to connect through the social media sites and then connecting in person as well.

What has been the biggest challenge living with or with someone with arthrogryposis? My biggest challenge is coping with the fact that I am dependent on someone for daily tasks, such as bathing, feeding and transferring. I am constantly adding things to my plate and need to understand it is ok to slow things down a bit, as sometimes assistance is needed from others. Not a bad thing, just a change in mindset I need to work on.

Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true? YES. Every day! Just because you have a disability doesn't mean you do not work. People are always asking me what I do with my day. I just want to answer and say "when I am not working?" I work entirely too much, but I wouldn't change a thing. I do not let my disability define me. I will always be an advocate for those with disabilities and reiterate the fact that we can work (on the same level, if not better than an able-bodied individual!).

Quick! List the first three fun facts about you that pop into your head... Motivated, selfless, confident.

What would you want to tell others that have AMC? Don't let a disability get you down. I would be a hypocrite to say I haven't had bad days where I sympathized for myself, but that comes and goes, and that is not just disability based. Set your mind to something and I am sure you can accomplish it.

What's one thing you hope to accomplish this new year? Successfully teach my first course as an adjunct professor at Wilmington University.

Is there anything you'd want to learn more about through AMCSI? More independent living examples from AMCers confined to a wheelchair.

Complete the following sentence: Arthrogryposis is... A big part of me! Would I change it if I could? No way, Jose! I wouldn't be the same person I am today if I didn't have AMC! I am proud to be part of such a great community, who I call family.



I am Jessica Lappin from Massachusetts, and I am a student at the University of Massachusetts Dartmouth and study for Liberal Arts with two concentrations which are Women's Gender Studies and Sociology. Also, I studied Art History with a minor. I am going graduate in May with Liberal Arts Bachelors Degree with Art History Minor. Before I went to University of Massachusetts, I went to local community college for six years as a part-time student and studied for Web Design and Media Arts Associate Degree. At University of Massachusetts, I am a full-time student living on campus with an apartment with a roommate. I also love to take photography as my hobby. I also volunteer my time with the local YMCA as their photographer by taking pictures of their events.

What is the best part about being a member of AMCSI? The best part about being a member of AMCSI is meeting new people with arthrogryposis and going to the AMC conferences and giving each other tips on how to do things with AMC.

What has been the biggest challenge living with or with someone with arthrogryposis? The biggest challenge about living with AMC is the joint pain during winter. When the weather is cold, my joints get weak and stiff due to the surgeries, according to my doctor, so I have to crank the heat to get rid of the pain. I had tons of surgeries as a kid and now as an adult in my 30s, I have a lot of joint pain from those surgeries. This is one of the biggest challenges I face, but AMC does not stop me because I will find a way to do my daily routine.

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 wish others did not see AMC as a weakness because, for me, it has made me strong. When I was a child, I ran in races with Special Olympics and won a few medals. Today I still work out for fun by going local YMCA or take the yoga classes to build my muscle strength.

Quick! List the first three fun facts about you that pop into your head... I am an inspiration, funny, and artistic. My family and friends say I am an inspiration to them because I will try anything. AMC cannot stop me. I have been a college student for ten years and will receive my bachelor's degree. I am funny because my family tells a lot of jokes especially when I am recovering from the surgeries in the Pre and Post OR room. Before I go into surgery, my family tells stories with photographs to make me happy, and sometimes I laugh. Lastly, I am artistic since I love making art by using a digital camera and mostly take photographs of landscapes. It took a long time to take a photograph but somehow I figure out how to take pictures by myself.

What would you want to tell others that have AMC? During my first conference in Florida, I said to all AMCers and their families, "Never Give Up" because for me I will keep trying, such as going college and how it took longer for me than a regular student. But I did not give up and this spring I will graduate from college, and not from one but from two colleges: community college AND university college. So, I want to tell all AMCers to not give up on your dreams because you will do it no matter how long it takes. I will receive bachelor's degree and associate degree, and I was a student for ten years.

What's one thing you hope to accomplish this new year? The one thing I hope to accomplish this year is to find a job after graduating from college in my field of photography and web design and of course get paid!

Is there anything you'd want to learn more about through AMCSI? I would love to find out more about how AMCers find their jobs and do they have accommodations like with college.

Complete the following sentence: Arthrogryposis is... Arthrogryposis is great thing to have because it teaches myself and my family that anyone can still do things but it may take longer to finish it but you can do it.




BECOME A MEMBER of AMCSI

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.





AMC Research: Where We Are and Where We Are Headed

Two years ago, Dr. Bonnie Sawatzky obtained a small grant from the National Rare Diseases organization in order to start a research endeavor to gather data on a population within the AMC Community that is not readily studied by the medical community: adults living with Arthrogryposis. Dr. Sawatzky is an Associate Professor in the Department of Orthopaedics at the University of British Columbia. Dr. Sawatzky also has all-extremity Arthrogryposis. With the assistance of graduate students, Dr. Sawatzky created a survey of questions that would gather data about mobility and functional outcomes. Once the survey was made available to the community, 177 adults with AMC from across the world completed the survey. From the data gathered Dr. Sawatzky, Dr. Judith Hall and Hirand Nouraei wrote a paper titled Long-Term Functional and Mobility Outcomes for Individuals with Arthrogryposis Multiplex Congenita. This paper was just accepted for publication into the American Journal of Medical Genetics. A secondary survey specifically on pain in adults with Arthrogryposis was conducted a year after the initial survey began. The results of this study are being wrapped up currently.

A highlight of the initial survey is that the rate at which people with AMC obtain advanced degrees is higher when compared to the general population. What else could be learned from gathering even more data, especially over time? Dr. Sawatzky held focus groups for men and women at the 2016 AMC Conference with the intent to get a registry started in order to continue gathering data. A registry would be a place for participants to enter data every year about their lives and update information as needed. Dr. Sawtzky discussed with the participants what information should be collected in this registry. The participants suggested collecting data about all aspect of life from employment, relationships, leisure, pain, secondary diagnoses, mobility levels, and adaptive equipment used. A committee was formed after conference to continue working on establishing a registry and this committee has been meeting monthly. The committee consists of Dr. Sawtzky, Nicole Sidebottom, Tracey Schalk and Dr. Ann Marie Davis. All four committee members have Arthrogryposis and represent a spectrum of ages. The committee applied for a grant through the Canadian Institutes of Health Research with the goal of obtaining funding to start the process of building the registry.

Nicole and Tracey are excited to be a part of this incredibly important project. Nicole explains, "Bonnie's research will help us know more about long-term outcomes for those aging with AMC, as well as help us manage pain and maintain a good quality of life for as long as possible. Furthering this research will enable us to take better care of ourselves as we age, educate the medical community about treatments for adults with AMC, and will be an invaluable resource to families as they navigate the many uncertainties of caring for a child with AMC. We all benefit from this research; we owe it to this incredible family we find ourselves in." And Tracey adds, "Attending the AMC conference every year is encouraging because I see the pediatric surgeons learning, growing and improving their treatment methodologies, which is fantastic. But there needs to be more then just a one-hour "Adult with AMC" session every year where adults can gather information about getting older with AMC and the issues that may come with it. We need a place to first gather, more formally, data about hundreds of adults of AMC in order to focus in on where research really needs to be geared. We need a place where practitioners can learn from a multitude of adults with AMC in order to provide higher quality heath care that has little to no guessing at the effectiveness of that care. When I get the privilege to snuggle close a baby with AMC and I look into their sweet little eyes and hold their tiny bent hands, I know that because of AMCSI they will never feel 'alone' as I did, but at the same time I look at them and realize that they will grow up and become an adult. That realization motivates me to work on this adult registry project because she deserves better then what I currently have. She is worth the effort."

Stay tuned for more information and opportunities for you to get involved!



AMC Meetup - Rochester, NY | Where: National Museum of Play - Rochester, NY | When: Saturday, February 25, 2017 | Time: 3pm

2nd Annual AMC Bowling Tournament Fundraiser - Louisville, KY | Where: Ten Pin Lanes - Louisville, KY | When: Sunday, February 26, 2017 | Time: 1pm

Fundraiser for AMCSI - Staten Island, NY | Where: Rab's Country Lanes - Staten Island, NY | When: Sunday, March 12, 2017 | Time: 1pm

AMC Meetup - Los Angeles, CA | Where: Shane's Inspiration - Griffith Park | When: Saturday, March 25, 2017 | Time: 11am | More information

AMC Meetup - Greenville, South Carolina | Where: Greenville Shriners Hospital · Greenville, SC | When: Saturday, May 6, 2017 | Time: 8am | More information

AMC Music Festival - Staten Island, NY | Where: Killmeyer's - Staten Island, NY | When: Saturday, June 3, 2017 | Time: 7pm

AMC Meetup - Yukon, Oklahoma | Where: Freedom Trail Park | When: Saturday, September 16, 2017 | Time: 12pm | More information

Also, be sure to check out Ward Foley's Scarfest. Upcoming dates below!





Arthrogryposis Support Group Hosts 9th 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 ani.amcsi@gmail.com.

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





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