Listen to Webpage
Days
Hours
Minutes
Seconds
Welcome to the 19th Annual AMCSI Conference in Atlanta, Georgia!

Meet The Team

Staff

Ani Samargian

AMCSI Founder

Ani is the proud mom to Abigail, who was born with arthrogryposis, Aiden, Isabella, and Ciaran. Ani served on the AMCSI Board of Directors for 15 years before formally resigning in 2021. Ani remains involved in the day to day operations of AMCSI, assisting our team and BOD with various tasks, projects, outreach, support and fundraising. Ani graduated from the City University of New York and Winthrop University (Non Profit Management). Ani also completed non-profit training from the Grassroots Leadership and Development Institute at the Spartanburg County Foundation in 2015. Learning about Abby’s AMC and supporting families going through a similar journey, was the drive and inspiration behind AMCSI. Ani lives with her family in South Carolina.

Maria Cherjovsky

Executive Director

Maria has dedicated over 25 years to the fields of workforce development, nonprofit management, social services, and higher education. She’s held executive roles at the University of Central Florida as well as local nonprofit organizations as Vice President of Mission Services and Workforce Innovation for Goodwill Industries of Central Florida, President of the Florida Diversity Council, Vice President of Operations for the Coalition for the Homeless, and President/Executive Director of the Central Florida Disability Chamber of Commerce, which she helped transition to what is now the Florida Abilities and Inclusion Network is an organization that leads advocacy and employment efforts for individuals with disabilities while assisting employers in developing diversity plans and strategies to ensure inclusivity and access for all. In addition to these roles, Maria was a college professor for ten years; a career coach, project manager, and consultant for 15+ years, both domestically and internationally. Maria’s work has been recognized by numerous organizations, including:

  • The National Diversity Council
  • The Society for Human Resource Management
  • The Gabor Organization
  • The Adult and Continuing Higher Education Association (ACHE)
  • United States Congress
  • Most recently by the Orlando Business Journal, which, in 2020, awarded María the inaugural Diversity in Business Lifetime Achievement” Award.

 

Maria holds a Bachelor’s degree in Business Administration and a Master’s in Instructional Systems Design. She has also completed the coursework towards a doctoral degree and has earned several Master’s certificates in topics such as Project Management, Human Resource Management, and Career Counseling. She is also a Certified Diversity Professional (CDP) under the National Diversity Council and has extensive experience in leadership, strategy, consulting, public relations, fundraising, DEI, and communications. She has served on Boards, led and supported the Board of Directors, and is a frequent speaker at conferences and training events. Maria currently lives in Central Florida with her husband and two children.

Ted Houser

Graphic Production Artist

Ted is an artist with over 20 years of professional graphic design experience in coordinating graphic production for events, marketing for multiple businesses and website design and owns TBSDesigns. Ted currently resides in Philadelphia, PA where he loves taking his BMX bike for rides to the art museum. Ted is excited to be a part of the team, as an AMC’er, and helping families & those with AMC.

Board Of Directors

Alexis Record

President

Alexis Record lives in San Diego with her husband, Charles Wesley, their two kids, three kitties, and occasional foster kittens. Her daughter, Laelia, was born in 2007 with the amyoplasia type of AMC and her daughter, Violet, was added to the family in 2012 with the distal 2E type of AMC. Alexis is the executive director of Sunday Assembly San Diego, a non-religious inclusive community that does a lot of community service projects in their surrounding neighborhoods. In 2014, she wrote a children’s book called Different Like Me to help kids understand arthrogryposis and be able to pronounce it. It features both her children in cartoon form.

Marshall Johnson

Vice President

Marshall Johnson was born and raised in Maine where he took an interest in travel and culture from an early age. Affected in his upper extremities, Marshall didn’t let arthrogryposis deter him from exploring, teaching and traveling in 20+ countries as an adolescent and young adult. He’s since settled in to a career in healthcare finance and employee benefit consulting in New England, where he lives and enjoys spending time outside with his family. He was introduced to AMCSI in 2014, noting he’d not met another person with Arthrogryposis outside of a clinical setting until he was 30! You’ll often find Marshall biking, hiking, fishing, camping, skiing or playing soccer – just a few of the things his parents were told he wouldn’t do. He wants to thank parents everywhere for all the tough choices they make before we’re able to make them for ourselves, but especially parents of AMCers. Now a father, Marshall’s focused on helping raise a kind, empathetic kiddo who celebrates ability in all its forms. So how does he see AMC? He sees iAMCapable.

Jennie Paradeis

Secretary

Jennie Paradeis is a proud AMC mom to daughter Dylann. She holds a Master’s degree in Counseling Psychology and one in Business Administration. She is program manager at a non-profit health plan overseeing a program that serves Minnesotans who are on a state disability product. Starting in 2015, Jennie hosted a charity 5k event with the goal of raising awareness for AMC and providing financial support for AMCSI for 5 years before joining the board in 2019 . In her spare time Jennie enjoys reading, traveling, and spending time with her family. She currently resides in Minnetrista, MN

Michele Shaffer

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.

Josh Russell

Treasurer

Joshua Russell and his wife Ashlee are originally from Topeka, Kansas, and moved to Florence, Alabama, in late December 2015. They have one daughter, Piper, who was born in 2017. Shortly after Piper was born she was diagnosed with AMC (Amyoplasia). They connected with AMCSI through Facebook and attended their first conference that year in Columbus. The AMCSI community and conference was instrumental in getting them connected with knowledgeable healthcare teams and other families.

Outside of AMCSI Josh is a Partner at Patterson, Prince & Associates, PC and has experience in private, investment, and public (including not-for-profit) accounting.

Dr. Harold van Bosse

Medical Director

Harold J.P. Van Bosse, M.D. has been practicing pediatric orthopedic surgery exclusively since completing his orthopedic residency at the University of Illinois in Chicago in 1994, and his fellowship at Toronto’s Hospital for Sick Children in 1995. His specialty interests within pediatric orthopedics are arthrogryposis multiplex congenita (AMC), Prader-Willi syndrome (PWS), idiopathic clubfoot deformity, limb malalignment conditions, and pediatric spine deformities, especially of the growing spine. AMC and PWS alone make up more than 90% of his practice, allowing him to delve deeply into his special interest. He has published widely on topics related to arthrogryposis, clubfeet, and Prader-Willi syndrome. When developing an arthrogryposis center, the goals are to allow children with arthrogryposis to reach their fullest potential, both by addressing their limb deformities, as well as helping them to function/adapt to the limitations they have. Dr. Van Bosse considers himself privileged to follow patients from both North and South America, as well as Europe and Asia. He could not have gotten this far without the support of his wife, Ana.

AMCSI-Meet-The-Team-Brittanie

Brittanie
Hernandez-Wilson

Member-At-Large

Brittanie Hernandez-Wilson (she/her) is a passionate advocate for Disability and Racial Justice based in St. Paul, Minnesota. As the dedicated Equity and Justice Director at The Arc Minnesota, she wholeheartedly champions the human rights of individuals with intellectual and developmental disabilities. Brittanie proudly identifies as a Disabled, Woman of Color, dedicating herself to disability justice and challenging ableism. She has served on the Sub Minimum Wage Task Force and The Governor’s Council on Developmental Disabilities, contributing to substantial progress within the Disability community.

Carol Weinrod-Velez

Member-At-Large

Carol Weinrod-Velez lives with her husband in Brooklyn NY and is mom to Yuri-AMC and Sean, and dog-grandma to Dakota. She holds degrees from SUNY Purchase and Columbia University. Active in the AMC community for over 30 years she is excited to join the Board of Directors of AMCSI. Carol is recently retired from a professional career as a Nurse Case Manager having started out in Pediatrics many moons ago! She has testified before the US Congress on matters related to health care and caregivers. She is a first Soprano in the Grace Chorale of Brooklyn, is an avid karaoke singer and takes blues guitar classes. Family, social justice activism and music give her great joy!

Erin Miller

Member-At-Large

Erin was born with AMC. Growing up in a small town, Erin quickly learned how to adapt to her surroundings and find creative ways to do things, like rearranging her bedroom back to how she wanted it while her mother was sleeping one night! She has her Masters in Rehabilitation Counseling and a bachelor’s degree in Criminal Justice. Erin lives with her four dogs and four cats in Harrisburg, Pennsylvania, and works full-time for the Social Security Administration. She is passionate about equality and working to improve the lives and independence of people with disabilities. In her free time, Erin enjoys playing with her dogs and spending time with friends and family.

Matthew P. Cavedon

Member-At-Large

Matthew P. Cavedon has arthrogryposis and uses a wheelchair. In his youth, Cavedon was a national spokesperson for Boundless Playgrounds and a member of the National Council on Disability’s Youth Advisory Committee. He graduated from Harvard College and Emory University. A former law clerk and public defender, he is currently the Robert Pool Fellow at the Center for the Study of Law and Religion at Emory University. Cavedon and his wife live in South Carolina and are active in their Catholic parish.

Medical Advisory Board

Dr. Harold van Bosse

Medical Director

Harold J.P. Van Bosse, M.D. has been practicing pediatric orthopedic surgery exclusively since completing his orthopedic residency at the University of Illinois in Chicago in 1994, and his fellowship at Toronto’s Hospital for Sick Children in 1995. His specialty interests within pediatric orthopedics are arthrogryposis multiplex congenita (AMC), Prader-Willi syndrome (PWS), idiopathic clubfoot deformity, limb malalignment conditions, and pediatric spine deformities, especially of the growing spine. AMC and PWS alone make up more than 90% of his practice, allowing him to delve deeply into his special interest. He has published widely on topics related to arthrogryposis, clubfeet, and Prader-Willi syndrome. When developing an arthrogryposis center, the goals are to allow children with arthrogryposis to reach their fullest potential, both by addressing their limb deformities, as well as helping them to function/adapt to the limitations they have. Dr. Van Bosse considers himself privileged to follow patients from both North and South America, as well as Europe and Asia. He could not have gotten this far without the support of his wife, Ana.

Dr. Judith Hall

Medical Advisor

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.

Dr. Maureen Donohoe

PT, DPT

Dr. Donohoe is a board certified paediatric clinical specialist whose expertise is in paediatric orthopaedics. She has been working with contracture disorders for over 30 years, as the primary physical therapist in the hospital’s Arthrogryposis Program, Osteogenesis Imperfecta Program and Clubfoot Program. Dr. Donohoe authored the chapters on arthrogryposis and osteogenesis imperfecta in all six editions of Physical Therapy for Children, authored “Therapy, Orthotics and Assistive Devices for Osteogenesis Imperfecta” in Osteogenesis Imperfecta: A Case-Based Guide to Surgical Decision-Making and Care, “Ambulatory Assistive Devices for Children and Youth with Cerebral Palsy and Activities of Daily Living Supports for Persons with Cerebral Palsy” in Cerebral Palsy (2nd edition), the Relapsed Clubfoot in Paediatric Clinical Case Studies, as well as “Sports and Recreation” in Children with Osteogenesis Imperfecta: Strategies to Enhance Performance. She has been involved in over ten research studies related to physical ability for individuals with arthrogryposis and clubfeet. She has lectured nationally and internationally on these topics.

Dr. Sara Lemin

Medical Advisor

Dr. Sara Lemin is a board-certified Obstetrician Gynecologist practicing full-time in Canton, Ohio. She has served as the chairman of the Department of OB/GYN at Cleveland Clinic Mercy Hospital and is currently an Assistant Program Director of the OB/GYN residency program at Aultman Hospital/NEOMED. In addition to her private practice, Dr Lemin has a particular interest in the prenatal detection of arthrogryposis and raising awareness among pregnancy care providers in order to help more families prepare for the birth of their child with AMC. Dr Lemin and her husband Ian have seven children, including two boys with AMC, blessing them with a unique position at the intersection of AMC and pregnancy care. Together they founded the non-profit Take TIME For AMC, an organization dedicated to research and promotion of the prenatal detection of arthrogryposis. Dr Lemin is honored to work alongside her distinguished colleagues on the Medical Advisory Board for AMCSI.

AMCSI International Ambassador

Misha "Dream" Walker

International Ambassador

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.

AMCSI Junior Ambassador

Keira Roko

Junior Ambassador

Yadriel Gonzalez-Siebenns

Junior Ambassador

Rosa Vaughan

Junior Ambassador

Skip to content