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Ani is the proud mom of four, one of whom was born with arthrogryposis. 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 AMC and supporting families going through a similar journey was the drive and inspiration behind AMCSI.
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
Ted is an artist with over 20 years of professional graphic design
experience in coordinating graphic production for events,
marketing for multiple businesses, 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.
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.
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.
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.
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.
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.
Siera discovered AMCSI while searching for resources on Arthrogryposis and found a supportive community. 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.
My name is Lorenzo Harrison, but all of you know me as either Rod or Uncle Rod. I was born with Arthrogryposis Multiplex Congenita, where I am affected in all four limbs of my body. Gaming, technology, AMC, sports, and family are all things that will bring me to the table. I have always wanted to be an activist for AMC. I have a deep passion for always wanting to help others in any way that I can. I want to leave the world a little bit better than when it was before I got here. Professionally speaking, I am a technical project manager/producer within the world’s gaming, IT, and entertainment sectors. I have over 11 years combined, either developing, leading, or producing content for the masses. When I am not helping others in my spare time, you can find me playing games on my PlayStation, Xbox, or laptop. I am incredibly honored to be a board member, and I promise to put the family first in every decision I make. I thoroughly look forward to serving all of you to the best of my abilities and having a little fun in the process.
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.
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.
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.
Junior Ambassador
Junior Ambassador
Junior Ambassador
Arthrogryposis Multiplex Congenita Support Inc. (AMCSI)
P.O. Box 6291
Spartanburg, SC 29304
1-805-55-AMCSI (1-805-552-6274) | info@amcsupport.org
Arthrogryposis Multiplex Congenita Support, Inc. is a 501(c)(3) tax-exempt organization.
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