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.

Founder

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.

 

Board of Directors

Melissa Snyder | Interim President

Melissa Snyder was born with AMC and is affected in all 4 limbs. She resides in Columbia, South Carolina with her boyfriend Cory and their adopted Pitbull mix Gibbs. She is a classically trained Soprano who graduated from The South Carolina Governor’s School for the Arts and Humanities and went on to study Vocal Performance at Mars Hill College. After moving back to SC, Melissa started working at Able SC. It was there that she found her true passion, empowering people with disabilities to lead independent lives. She hopes to finish her degree in Social Work, acquire a MSW, and work with transition aged youth with disabilities.

 

Joey Balistreri | Vice President

Joey Balistreri is the proud parent of Liam, an incredible little two-year old-born with AMC. Joey is a former public school teacher and instructional coach and holds a Master’s in Public Administration with a focus in non-profit management from the University of North Carolina at Chapel Hill. Joey is excited to step into he role of Secretary on the AMCSI Board of Directors and continue advocating for Liam and others with AMC. In his free time, Joey loves spending time with his family and enjoying the outdoors; he’s also a classically trained violinist and enjoys participating in community orchestras. Joey and his family currently reside in Milwaukee, WI.

 

Jennifer Paradeis | Interim Treasurer

Jennie Paradeis is an AMC momma to daughter Dylann.  She holds a Master’s degree in Counseling Psychology and one in Business Administration.  She is a mental health therapist and currently works full-time as a clinical program consultant for OPTUM.  Jennie has hosted a 5k event since 2014 raising awareness for AMC and financial support for AMCSI. This work promoted her desire to become more active and involved in the AMCSI mission and work.  In her spare time Jennie enjoys reading, traveling, and spending time with her family. She currently resides in Minnetrista, MN.

 

Alexis Record | Secretary

Alexis Record lives in San Diego with her husband, Charles Wesley, and their two kids.  She works in homeless services hand-delivering food, water, and toiletries to unsheltered people, is a live kidney donor who advocates for those with renal disease, and is the chairperson of community service as well as  the executive director of Sunday Assembly San Diego. After her daughter, Laelia, was born in 2007 with the amyoplasia type of AMC, the lovely Dr. Hall informed them this type was not genetic so it was highly unlikely their future children would have it. The Record/Wesley family got to surprise Dr. Hall the next time they saw her! In 2012, Alexis and her husband adopted a two-year old with AMC in all four limbs named Roland. In 2014 Alexis wrote a children’s book called Different Like Me to help kids understand arthrogryposis and be able to pronounce it. 100% of proceeds from the book went to supply medical equipment to kids with AMC or to fund adoptions of children with AMC.

 

Michele Schaffer | Vice President of Programming

Michele Schaffer and her husband Allen have four children, David, Andrew-AMC, Christopher, and Kaytlin. Michele currently works for the New Albany Plain Local School District in the Special Education Department. Michele joined the Board of Directors of Arthrogryposis Multiplex Congenita Support, Inc., in 2006 and served as a Co-Chair for the 2008 Ohio Conference. She accepted the position Vice-President of Programming in 2010. In her free time, Michele enjoys attending her children’s activities, volunteering, reading and singing with The Voices of Ohio, a professional vocal ensemble. Michele and her family currently reside in Columbus, Ohio.

 

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.

 

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 interest is human congenital anomalies and in particular arthrogryposis (multiple congenital contractures). She has published over 300 original peer reviewed articles, 140 chapters, 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.

Maureen Donohoe, PT, DPT, PCS

Dr. Donohoe is a pediatric physical therapist and clinical specialist at Nemours/ Alfred I duPont Hospital for Children where she has specialized in pediatric orthopedics and participates in many of the hospital’s orthopedic specialty clinics. She has been the primary PT in the arthrogryposis program at the hospital since 1989 and the clubfoot program since 2009.  Reenee has also spent the over 20 years working part time as a  preschool and school based physical therapist.  Most recently, through her personal contracting agency she has been supplying consultative PT services to adults with pediatric disorders. Dr. Donohoe has authored the chapters on arthrogryposis and osteogenesis imperfecta in tall five editions of the textbook Physical Therapy for Children, authored the Relapsed Clubfoot in Pediatric Clinical Case Studies, and the Sports and Recreation chapter in Children with Osteogenesis Imperfecta: Strategies to Enhance Performance. She is actively involved in research involving AMC and has been involved with multiple published research papers. She has had the opportunity to lecture nationally and internationally on AMC.

 

International Ambassador

Misha “Dream” Walker

Misha “Dream” Walker from Arequipa, Peru, was born with Arthrogryposis. Now living in Lima, Peru, Misha works as an insurance broker and as an Inspirational speaker/blogger as part of her “Dream Walker” project. Misha devotes her life to helping others in need of guidance, and raising awareness for AMC globally and by using her life experiences to inspire people to seize the opportunities offered to them. Misha is an advocate for people with disabilities, motivating them to alter their view of the world around them and how to interact with it, and embrace their lives to the fullest, whilst also pushing to reshape the world´s view of what it means to be disabled.

On her free time, Misha likes to go the beach with her husband, spend time with friends and paint, she also loves music and fast cars.

 

Junior Ambassador

AMC Princess Ana

Meet Anastasia, also known as AMC Princess Ana. Ana is four and lives with her Nana, who she calls Mommy because she has been raised by her Nana since she was 4 months old. Ana was born with her arms stuck straight and her legs stuck bent. She has had many surgeries and lots of therapy to help her become more independent. Ana loves to read, dance, sing, play, laugh, smile, and make videos. She works hard to raise awareness for Arthrogryposis through social media and when she grows up she wants to be a scientist, an actress, and an astronaut. She loves her AMC family and hopes that people learn to love each other even if they are different. You can find her on all the social media platforms at @amcprincessana.

 

Financial Team

Maureen Goede

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.

 

Website Team

Ileana Hernandez | Media Director

Ileana Hernandez is from Los Angeles, CA. When Ileana was born, the doctors told her parents she would never move or walk but she had different goals. She walked at two and a half and hasn’t stopped moving since. Living with a disability like arthrogryposis definitely has had its challenges but she is thankful for all the good things it has brought along the way…like the AMC conference and community! For several years, she was on the board of directors for AMCSI and had the opportunity to travel to Russia and Poland with Ani and Dr. van Bosse. For someone who grew up not knowing anyone with arthrogryposis, getting to meet AMCers from other parts of the world was an incredible experience. While she is no longer on the board of directors, she continues to volunteer for AMCSI and works on their website, social media, and newsletter teams. She is also a freelance graphic designer and illustrator who loves to travel, musical soundtracks is all she ever listens to, and everyone knows you can probably always find her at Disneyland!

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