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Founded in 2005, AMCSI (Arthrogryposis Multiplex Congenita Support, Inc.) began as a small online group of mothers searching for answers, support, and understanding after their children were diagnosed with Arthrogryposis—a rare, non-progressive congenital condition affecting joint movement. What started as a heartfelt chat among parents has grown into the world’s largest and most trusted online community for AMC awareness, education, and support.
Today, AMCSI connects thousands of individuals and families across the globe, offering expert-backed resources, emotional support, advocacy tools, and life-changing events. Our mission is to ensure no one faces AMC alone. Through our website, conferences, and outreach programs, we continue to spread awareness, promote research, and uplift those affected by this rare condition.
Join us as we champion inclusion, celebrate ability, and provide hope to the AMC community—one story at a time.
Ani Samargian is the Founder and Community Support Advocate of Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI), where she has spent more than two decades building connections, expanding resources, and supporting individuals and families affected by AMC.
Ani’s journey in the AMC community began following her daughter’s prenatal diagnosis. What started as a search for information and connection grew into a lifelong commitment to ensuring that individuals and families affected by AMC have access to support, education, resources, and a community that understands their experiences.
Through AMCSI, Ani has helped connect individuals with AMC, families, medical professionals, researchers, and advocates around the world. Her work spans nonprofit leadership, family and community support, educational programming, conference development, advocacy, research collaboration, and partnerships between the AMC community and the professionals who serve it.
Ani also brings the voice and lived perspective of the AMC community to research and professional collaborations. She has contributed as a co-author to multiple peer-reviewed publications addressing rehabilitation for children with arthrogryposis, pregnancy and prenatal counseling, adult experiences with amyoplasia, the role of support communities, and international collaboration in AMC research, care, and education.
Her educational and leadership background includes nonprofit management studies at Winthrop University and leadership development through the Grassroots Leadership Development Institute at the Spartanburg County Foundation.
At the heart of Ani’s work is a simple commitment: no one affected by AMC should have to navigate their journey alone. For more than 20 years, she has worked to build a stronger, more connected AMC community where individuals and families are heard, supported, and included in the conversations and decisions that affect their lives.
Ted Houser is a digital strategist and UX-focused web designer with experience leading websites, campaigns, and conversion-focused initiatives for nonprofits, events, and small businesses. Proven ability to improve SEO visibility, increase revenue from sponsorships and merchandise, and build scalable digital systems that support engagement, fundraising, and operational efficiency. Strong background in WordPress development, UX/UI, content strategy, analytics, and Adobe Creative Suite.
With over 20+ years of experience in graphic design, event production, marketing, and web development. As the founder and owner of TBSDesigns since 2006, he has collaborated with businesses and organizations around the world, specializing in branding, website creation, and international logo designs. Based in Philadelphia, Ted is proud to bring his expertise and lived experience as an individual with Arthrogryposis Multiplex Congenita (AMC) to the team, dedicated to supporting and empowering the AMC community and their families.
Tracey Schalk lives with AMC in all limbs. She has a bachelor’s degree in Political science and disability studies from The Ohio State University. She has worked in various positions in Ohio’s developmental disabilities system of care, doing case management and vocational rehab, and, currently, quality assurance and eligibility determination. She is on the Board of Directors for Arthrogryposis Ohio and was part of the team that helped start the AMC Adult Registry. She lives in Findlay, Ohio, with her husband, John, and dog, Winston.
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.
Michele Schaffer and her husband Allen have four adult children, David, Andrew-AMC, Christopher, and Kaytlin. Michele currently works for the New Albany Plain Local School District as an Intervention Specialist. She joined the Board of Directors of Arthrogryposis Multiplex Congenita Support, Inc., in 2006. With the help of the amazing Loon Crew, she has planned the Annual Conference since 2010. In her free time, Michele enjoys reading, crafting, and volunteering. Michele and her family currently reside in Columbus, Ohio.
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.
Mark Indreika has spent 29 years teaching high school English in the Chicago area. He attended Northern Illinois University earning undergraduate degrees in journalism and in English education. He also completed a graduate degree in English and American Literature. Before the pandemic, he spent two years editing and writing the old AMCSI newsletter, AMC Today. He enjoyed the work since he has a passion for telling stories, especially the stories of people with AMC. When he retires from teaching in 2026, he looks forward to devoting even more time to AMCSI. He said this about the organization, “My wife Jane and I have been members of AMCSI for over 10 years. Before my first conference, I saw myself as somewhat of an anomaly, but now I see myself as a member of a very large and inclusive community. People with AMC come from all socioeconomic backgrounds; from all cultures and races; and from all political and spiritual persuasions. Unlike the rest of our divided society, however, our community has found unity.
Siera discovered AMCSI while searching for resources on Arthrogryposis and found a supportive community. Since then she has attended several conferences and learned something new each time. Siera joined the board to support the community that helped her. She works for RIPIN, a nonprofit that helps all Rhode Islanders throughout their lifespans navigate the special education, health insurance, and healthcare systems. She supports RIPIN’s administrative department, co-facilitates the Chronic Pain Self-Management Program, and is a mentor for the Youth Advisory Council, a group of youth and young adults who make a difference in health issues affecting that population. Siera served on Rhode Island’s Independent Living Council. She lives in Wakefield, Rhode Island. When not working, Siera enjoys good food, new experiences, and learning fun facts about the Ocean State.
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 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. 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 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.
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.
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