Arthrogryposis
Multiplex Congenita Support, Inc.
Arthrogryposis
Multiplex Congenita Support, Inc.
P.O. Box 1883 Salyersville, KY 41465
Bylaws Board of Director meeting minutes & financial report Become a paid member of AMCSI Contact us
Our Mission:
To provide and encourage more understanding and mutual support among anyone affected with the diagnosis of Arthrogryposis Multiplex Congenita (AMC).
To create a higher standard of AMC awareness by means of Conventions, Meetings, and Studies.
Our Vision:
To provide educational material to new parents, or soon-to-be parents regarding the diagnosis of Arthrogryposis Multiplex Congenita (AMC).
To provide a resource of information to the medical field to include but not limited to occupational therapists, physical therapists to assist them in the treatment of a child or person with the diagnosis of AMC.
Board of Directors
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.
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 serves on the Board of
Directors of the Gateway Association, Inc., in her hometown of Anderson,
Indiana.
Vice President
and Program Director: Michele
Schaffer and her husband Allen
have four children, David, Andrew-AMC, Christopher, and Kaytlin.
After working as an elementary and secondary Special Education teacher, she
chose to become a full-time mom. She joined the Board of Directors of Arthrogryposis Multiplex Congenita Support, Inc., in 2006 and served as a
Convention Committee Co-Chair in 2008. She took over as Program director in
Aug. 2010. She enjoys spending time with her
family, volunteering at her Church and in her children’s schools, singing with
The Voices of Ohio, and serving on the Board of Directors of Yunnan Kids
International, a non-profit organization that supports the children who live in
Yunnan, China. Michele and her family currently reside in Columbus, Ohio.
Treasurer: Jennifer Keeton,
treasurer, 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 lives in Salyersville,
Kentucky
.
Secretary: Donna
Carleton, joined
the AMCSI BOD in 2006 and served as Co-Chair of the 2007 Convention. 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 live in Omaha, Nebraska.
Parliamentarian: Doris
Heckert, 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
reside in Baton Rouge,
Louisiana.
Member
at Large: Marybeth Eberhard,
served as Co-Chair for the AMC Support Inc. convention in
Columbus, Ohio. In 2008, the board appointed her Program Director and she
ended that position after the 5th convention 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.
Member-at-Large: Tracey Schalk,
served as convention Co-Chair
for the 2008 AMCSI. convention 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 & Disability
Studies. Tracey currently resides in Columbus, Ohio.
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. Zak, his wife, Erica, and their three children; Madisyn, Grace (AMC)
and Kahlan live in Ann Arbor, Michigan.
Medical Advisory Board
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 orthopaedic surgical conditions, with special interests in limb
deformity, neuromuscular disease, and pediatric spine deformities.
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
Rosalinda
Morales AMCSI's 1st president 2006-2009.
Served as a Convention Co-Chair for the 1st annual AMC convention, 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.
Melissa
Dickinson Member at Large 2008
Mom to Kelsey and Joey (AMC). She works fulltime as a Ultrasonographer and currently resides in Indianapolis, Indiana.
Wendy Sifuentes,
Secretary 2007- 2010 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
Committees
Fundraising: Jennifer Keeton, Theresa Lucas
2010 Convention: Marybeth Eberhard, Savanna Keeton, Maureen Goede, Theresa Tamash
2011 Convention: Michele Schaffer, George and Suzanne Rudder, and Rosalinda Morales
Financial: Jennifer Keeton, John De La Torre
Membership: Theresa Lucas, Savanna Keeton
Chat: Beverly Hanset-Burch, Tracey Schalk
AMC Awareness Day: Zak Purdon
