P.O. Box 6291, Spartanburg, SC 29304

Board of Directors

Ani Samargian | Founder

Ani Samargian is the proud mom of Abby, who was born with arthrogryposis, Aiden, and Isabella and Ciaran Allen. Ani serves on the Board of Directors of AMCSI, South Carolina Disabilities and Special Needs Board, and she is a Support Parent for Family Connection of South Carolina. Learning about Abby's AMC and supporting families going through similar situations was the inspiration and drive behind amcsupport.org. Ani and her family live in Spartanburg, South Carolina.

Theresa Lucas | President

Theresa Lucas is a self-taught Artist born with arthrogryposis multiplex congenita and serves as the President of Arthrogryposis Multiplex Congenita Support, Inc. She is a motivational speaker who speaks about her "diff" ability and demonstrates painting "her way". She also is Coordinator of the Annual High School Student Exhibition produced by the Art Association of Madison County, Inc. as well as serving on their Board of Directors. She also served on the Board of Directors of the Gateway Association, Inc., in her hometown of Anderson, Indiana.

Maria Ryan VonderHaar | Vice President of Administration

Maria Ryan is the mother of Abby, aka Abberdoodles, born in December of 2009 with arthrogryposis and congenital scoliosis. She resides near Minneapolis, Minnesota with her partner, Todd, Abby and stepchildren, Alissa and Nathan. Maria was an Early Childhood Special Education Teacher prior to having Miss Abby. She attended the University of MN with an emphasis on Child Psychology and Special Education. She has been involved in her local special needs community for 20 years and has a passion for working with children and families.

Michele Schaffer | Vice President of Programming

Michele Schaffer and her husband Allen have four children, David, Andrew (AMC), Christopher, and Kaytlin. Michele returned to the classroom this year as both a kindergarten-reading teacher and as a graduate student. She is currently completing the requirements to become a K-12 Literacy Specialist. Michele joined the Board of Directors of Arthrogryposis Multiplex Congenita Support, Inc., in 2006 and served as Co-Chair for the 2008 Ohio Conference. She accepted the position of Program Director in 2010. In her free time, Michele enjoys attending her children's activities, volunteering, singing with The Voices of Ohio, a professional vocal ensemble, and reading. Michele and her family currently reside in Columbus, Ohio.

Lana Prater | Secretary

Lana Prater was born with arthrogryposis multiplex congenita. Lana has 2 adult children and married her best friend, Delmer, in 2005. Lana was so blessed attending her first conference in 2013, that she knew right away she wanted to be a part of this amazing organization and help others to have the same blessing. Lana volunteered for a non profit pet adoption agency and owned and operated her own cleaning company for 7 years. She now enjoys being a homemaker. Lana loves to sing, spend time with her family and make people laugh. Lana and Del reside in Lewiston Idaho.

Paul Golembiewski | Treasurer

Paul Golembiewski is father of 3 beautiful children, Jason, Emma and Grace. Grace was born last year, Jan 2013, and was diagnosed with arthrogryposis. Three days after Grace was born Paul found AMCSI, the perfect support family. In 2013 he attended the annual conference in Las Vegas which has inspired him to help bring awareness to AMC. Paul has served his country for 16 years in the United States Air Force. He currently resides in Dayton, Ohio with his fiancee, Amanda DelaCruz.

Chris Hartwick | Parliamentarian

Chris Hartwick, was born with AMC. He works full-time as a graphic designer for Bob Jones University. He is a founding member of the Artists Guild Gallery of Greenville where he is serving as 2nd VP and works with the guest artist press releases. He is a student artist with the Association of Mouth and Foot Painting Artists. In his spare time Chris enjoys cooking and karate. He currently resides in Greenville, SC.

Ileana Hernandez | Media Director

Ileana Hernandez is a graphic artist born with arthrogryposis who designed the website for Arthrogryposis Multiplex Congenita Support, Inc. She works as a freelance graphic designer in Los Angeles, CA.

Medical Advisory Board

Dr. Harold van Bosse

Dr. Harold van Bosse is on staff at the Shriners Hospital for Children in Philadelphia, where he has had the opportunity to develop a specialty practice in the treatment of children with arthrogryposis. In addition, he enjoys treating the entire realm of pediatric orthopedic surgical conditions, with special interests in limb deformity, neuromuscular disease, and pediatric spine deformities.

Dr. Judith Hall

Dr. Judith Hall is a clinical geneticist and pediatrician. She trained at Wellesley College, the University of Washington School of Medicine, and the Johns Hopkins Hospital. She is presently Emerita Professor of Pediatrics and Medical Genetics at the University of British Columbia, Vancouver, Canada. Her area of research interests are human congenital anomalies and in particular arthrogryposis (multiple congenital contractures). She has published over 300 original peer reviewed articles, 140 chapters and conference proceedings, and 10 books. Dr. Hall is also the co-author of the AMC Text Atlas . She has been involved in arthrogryposis clinics for over 35 years with a particular interest in sorting out the causes (including genetic), natural history, and best therapies for individuals affected with arthrogryposis. She has published over 50 articles and chapters on arthrogryposis, and she continues to be actively involved in learning as much as possible about arthrogryposis so that she can help families and affected individuals.

Past Board of Directors

Donna Carleton | Secretary

Donna Carleton joined the AMCSI BOD in 2006 and served as Co-Chair of the 2007 Conference. She has 11 years experience in Direct Sales as a recruiter, trainer, and special event coordinator. Her passion for motivating and mentoring others to reach their potential has proven successful in the industry. As a previous Director of Youth, Donna spends the majority of her time volunteering with the youth in her church, school system, and community. In her spare time, she enjoys reading, traveling, and decorating. Donna, her husband Brian, and their three children, Cole, Kerri and Kadi (AMC) reside in Omaha, Nebraska.

Melissa Dickinson | Member at Large (2008)

Mom to Kelsey and Joey (AMC). She works fulltime as a Ultrasonographer and currently resides in Indianapolis, Indiana.

Marybeth Eberhard | Program Director | Member at Large (2008)

Marybeth Eberhard served as Co-Chair for the AMC Support Inc. Conference in Columbus, Ohio. In 2008, the board appointed her Program Director and she ended that position after the 5th Conference in Lake Buena Vista Florida, 2010. MaryBeth is an advocate for home schooling and is the loving mother of five children: Samuel, Peter, Gabriel - AMC, Lily and Joseph. Prior to being home with her children, MaryBeth taught first and third grades in an inclusive setting at an elementary school in Sudbury, MA. Marybeth and her family currently reside in Honesdale, Pennsylvania.

Maureen Goede | Secretary

Maureen Goede was born in Chile, and grew up in Chile, Argentina and Ecuador before finally moving to Miami, Fl where she attended high school. In 1983 she met her husband Armand and they were married in 1984. They have 5 children, Michelle, Massiel, Reinier, Josy and Ian. After Hurricane Andrew they moved up to Orlando, Fl where Maureen received her Bachelor's Degree in Accounting and then her Masters in Business Administration. Maureen is the proud grandmother of Sean, Breanna and Alayna who also live in Florida and 4 others who live out of the country. Sean was born with AMC, and when looking for answers about AMC they found AMC Support. Maureen, Josy and Sean attended their first AMC Convention in Chicago and look forward to the AMC Convention every year. Maureen and Sean have attended every single AMCSI Conference starting with Chicago and ending with the last one in 2012 in Indianapolis.

Doris Heckert | Parliamentarian

Doris Heckert, who is serving her 2nd term as Parliamentarian, and her husband Jonathan are the parents of a beautiful miracle named Jackson who has AMC. Doris serves as the Parent Component of Louisiana's Early Intervention program and sits on the Parent Advisory Council of Woman's Hospital. She enjoys spending time with her family, volunteering at her church, and serving as a Parent-to-Parent volunteer for a local hospital. Doris and her family currently resides in Baton Rouge, Louisiana.

Maggie Howell

Jennifer Keeton | Treasurer

Jennifer Keeton is a driving force behind AMC Support. She serves as a website administrator for AMCSupport.org and provides the organization countless hours of "behind the scenes" work to assure that AMCSI operates effectively. Jennifer holds a Bachelors Degree in social work from Morehead State University. Jennifer currently resides in Salyersville, Kentucky.

Rosalinda Morales | AMCSI's First President (2006-2009)

Served as a Conference Co-Chair for the 1st annual AMC Conference, Aug 3-6th. 2006. in Chicago Illinois. She enjoys spending time with her family, Isabella, Thalia, Lil Louie (AMC) and Lily. She works fulltime and enjoys volunteering at her Church. Rosalinda currently resides in Nixa, Missouri.

Dantè Nelson | Member-at-Large

Dantè Nelson lives in Colfax, Washington with her husband, Taylor, and 2 amazing children, KeiLèna Ava and E'Zra Dane. E'Zra has AMC, along with other neurological issues that doctors have not been able to diagnose. Dantè is blessed to be a stay at home mom with her supportive family by her side. AMC support has changed her life and given her the desire to become a member of this amazing organization! To spread awareness and support together is all anyone could ask for when you walk this journey!

Zak Purdon | Member-at-Large

Zak Purdon joined the AMCSI BOD in 2010. He has 15 years experience working in residential property management and teaches facilities maintenance at Washtenaw Community College. He started a website www.run4amc.org in Sept. 2010, to raise awareness for AMC. Zak, his wife, Erica, and their three children; Madisyn, Grace (AMC) and Kahlan reside in Ann Arbor, Michigan.

Suzanne Rudder | Member-at-Large

Suzanne Rudder joined the AMCSI BOD in November 2011 as a Member at Large and also serves as Conference Co-chair for the 2012 AMCSI Annual Conference and past 2011 conference. She has been active with AMCSI since 2006 and serves as a moderator on the boards. She graduated from the University of Missouri with a bachelors in Finance and Banking, with an emphasis in Accounting and currently works from home as a part of the freight bill and audit team for eShipping Logistics. Her and her husband, George, reside in the Kansas City area with their 3 children, Collin, Haley (AMC), and Mason (AMC). They are very active in their community and enjoy volunteering for various organizations helping kids and in their schools.

Tracey Schalk | Member-at-Large

Tracey Schalk, served as Conference Co-Chair for the 2008 AMCSI Conference in Columbus, Ohio. She has arthrogryposis, amyoplasia type in all four extremities. She is a senior at Ohio State University majoring in Political Science with minors in English and Disability Studies. Tracey currently resides in Columbus, Ohio.

Wendy Sifuentes | Secretary (2007)

Wendy Sifuentes is the "original member" of AMCsupport.org. She has served the Board of Directors as both a Member-at-Large and secretary. Wendy is the mother to two boys, Paul (6) and Patric (3). PJ (Paul) was born with arthrogryposis. She works full time as a teacher's assistant at a junior high school, and she is currently a college junior studying Elementary Education with a concentration in Special Education. Wendy and her family reside in Arlington, Texas.

Dale Wilson | Member-at-Large

Dale Wilson joined the AMCSI Board in the spring of 2011 by BOD appointment to fill a vacancy. He has arthrogryposis, amyoplasia type in all four extremities. Dale is an electrical engineer and works for Raytheon Co. For fun and fitness, he enjoys cycling on a bicycle modified slightly to fit his needs. Dale currently resides in McKinney, Texas, 30 miles north of downtown Dallas, Texas.

Technology Staff

Jeroen Tebbens | Technical Director

Jeroen Tebbens also known as "King J." Jeroen provides invaluable technical support to the Board of Directors. Jeroen resides in IJsselstein, Netherlands, and maintains the technical updates for both AMCSupport.org and AMCSupport.org/shop. Jeroen earned a degree from Polytechnic University (Netherlands) in Internet Communications and Computer Science. He is employed by Dimension Data Netherlands as an Implementation Consultant for Operations Management and Security. Jeroen does not allow his AMC to hold him back; in his spare time, he enjoys riding his motorcycle and swimming competitively with Masters Swimming, Netherlands.

Note from the Board of Directors

We have many projects in process, and we promise to be diligent in communicating information not just on the board of directors level, but also to all the members of AMCSI. We are available to hear your ideas and do what is in the best interest of AMCSI. We strive to assure that our members feel free to question any matter with which you have concerns.

Typically each sub-committee will be headed by a board of director, but we will need a group effort for all of our events to come to fruition.

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