Guest Speakers

Kimberly Kolstad

Keynote Speaker

Kimberly Kolstad is a full-time medical social worker at Craig H Neilsen Rehab Hospital at the University of Utah. For over 18 years she has been advocating for underprivileged individuals and most recently has had the opportunity to work with individuals with spinal cord injuries, amputations, and transplants. Kim has successfully created and runs a peer coaching program for patients with new spinal cord injuries. She works closely with TRAILS Adaptive Sports and has organized an event for Veterans with complex disabilities to experience the Tetra Watercraft. Kim has a love of adventure, and over the last two and a half years, her life has been changed for the better by participating in over 15 different adaptive sports, her favorites being snow skiing with the TetraSki, wake-surfing, and adaptive mountain biking. As a social worker and a person with AMC, Kim knows the importance of accessibility and inclusion for all. She is now advocating for adaptive sports to be known and accessible to all people with disabilities, especially those with AMC.

Dr. Harold van Bosse

Dr. Harold J. P. van Bosse, M.D. is a pediatric orthopedic surgeon at Cardinal Glennon Children’s Hospital in St. Louis, Missouri. Dr. van Bosse has been practicing pediatric 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 by addressing their limb deformities and helping them function/adapt to their limitations. Dr. Van Bosse considers himself privileged to follow patients from North and South America, Europe and Asia. He could not have gotten this far without the support of his wife, Ana.

Dr. Reid Nichols

Reid Nichols, M.D., FAOA, FAAOS, is a pediatric orthopaedic surgeon at Nemours Children’s Health, Delaware Valley, and Assistant Professor of Orthopedic Surgery, at Thomas Jefferson University. She received her undergraduate degrees from the University of Virginia and from Johns Hopkins University School of Nursing. She earned her medical degree from Northeastern Ohio Universities College of Medicine. After graduating from residency in orthopaedic surgery at Maimonides Medical Center in Brooklyn, NY, she completed a limb lengthening and reconstruction fellowship at the International Center for Limb Deformity in Baltimore, MD. Under the supervision of John Herzenberg, M.D., she received advanced training in the management of clubfeet. She received advanced training in pediatric orthopaedics after completing a fellowship at the Nemours/Alfred I. duPont Hospital for Children. She is currently the president of the Limb Lengthening and Reconstruction Society(LLRS). She is active in many societies, including the Pediatric Society of North America, LLRS, American Academy of Orthopaedic Surgeons, American Orthopedic Association, and the Ruth Jackson Orthopaedic Society. She has served as the BOS representative for LLRS and is currently the POSNA BOS representative. Dr. Nichols’ clinical interests include limb deformity and reconstruction, clubfoot, arthrogryposis, and pediatric trauma. She serves as the director of the Clubfoot Clinic and co-director of the Arthrogryposis Clinic.

Dr. Dan Zlotolow

Dr. Zlotolow is a Pediatric Upper Limb and Peripheral Nerve Surgeon at The Shriners Hospital for Children Philadelphia and Greenville, and The Hospital for Special Surgery in New York. He specializes in the care of children with Arthrogryposis, brachial plexus and peripheral nerve injuries, spinal cord injuries, complex post-traumatic deformities, congenital differences, and limb deficiencies. He leads medical outreach missions to Havana, Cuba and Kigali, Rwanda and has founded 3 professional societies including Plexus Nexus and the Pediatric Hand International Society of Surgeons (PHISOS). He travels nationally and internationally as a visiting professor and lecturer. He was also a team leader for Zion, the first pediatric hand transplant.

Don Brown

Don Brown has been in the financial services industry for over 30 years. He has been recognized as an industry leader in both personal production and management. Educating individuals and families on how to properly plan for dependents with special needs is a primary focus of Don’s practice. He has volunteered for over 20 years with Camp Fatima of New Jersey, an all-volunteer camp for individuals with developmental challenges. Don is a graduate of Rutgers University and has earned the Chartered Financial Consultant, Chartered Special Needs Consultant, and Chartered Advisor for Senior Living designations.

Dr. Maureen Donohoe

Dr. Donohoe is a board-certified pediatric clinical specialist specializing in pediatric orthopedics. She has worked 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 on the physical ability of individuals with arthrogryposis and club feet. She has lectured nationally and internationally on these topics. This is her 15th visit to share information at the AMCSI meeting.

Dr. Therese Willkomm

Dr. Therese Willkomm, Ph.D., is the Director of New Hampshire’s State Assistive Technology Program with the Institute on Disability at the University of New Hampshire (UNH) Dr. Willkomm is a clinical associate professor emeritus in the Department of Occupational Therapy. She developed, coordinated, and taught assistive technology courses for the Graduate Certificate Program in Assistive Technology for 23 years. She is known nationally and internationally for her innovative strategies for creating solutions in minutes. She has designed and fabricated over two thousand solutions for individuals with disabilities. She has presented her work in 42 states, ten foreign countries, and three U.S. Territories and has authored over 22 publications, including her recent book Assistive Technology Solutions in Minutes Book 3: – “Make Stuff and Love People”.

Dr. Lauren Hyer

Lauren C. Hyer, M.D. has worked at Shriners Hospitals for Children in Greenville, SC, since 2016. She completed her orthopedic surgery residency through Greenville Health System (now Prisma Health) in 2015. She spent the following year doing a pediatric orthopedic surgery fellowship at Phoenix Children’s Hospital in Arizona. Her main professional interests include arthrogryposis, gait improvement for cerebral palsy, and limb deficiency. Besides her work at Shriners, Dr. Hyer enjoys spending time with her husband and two young boys.

Dr. Noémi Dahan-Oliel

Dr. Noémi Dahan-Oliel is a Clinician Scientist at Shriners Hospital for Children-Canada and has been an Associate Professor at McGill University, School of Physical and Occupational Therapy since 2014. Her research program focuses on improving clinical outcomes for children living with musculoskeletal conditions, specifically arthrogryposis. Research designs include mixed methods, stakeholder engagement, and knowledge translation. Together with a wonderful multidisciplinary and multisite research team, she obtained funding for several clinical research projects in arthrogryposis. These projects include developing a registry for children with arthrogryposis across North America, expanding a registry for arthrogryposis internationally, developing a measure for the upper limb specifically for children with arthrogryposis, and exploring social deprivation and costs of caring in arthrogryposis to improve care and advance research in arthrogryposis.

Ms. Caroline Elfassy

Caroline Elfassy is an occupational therapist with a profound passion for upper extremity rehabilitation and outcome measure development. Recently, she completed her doctoral research at McGill University, where she focused on developing an upper extremity AMC-specific outcome measure (Shriners Hospital Arthrogryposis Pediatric Upper Extremity – SHAPE-UP), reflecting her commitment to advancing patient-centred care. Currently, Caroline is enrolled in post-doctoral training at the University of Montreal, collaborating with Ste-Justine and SickKids. In her current role, she is dedicated to enhancing mental health service delivery for children and youth with congenital upper limb differences (CoULD), aiming to address holistic care needs.

Ms. Rose Elekanachi

Rose Elekanachi is a 5th year Ph.D. candidate in the Rehabilitation Program at McGill University with a research interest in childhood disability, global health, rehabilitation and policy. She is a registered physical therapist with the Medical Therapy Rehabilitation Board of Nigeria and the Health and Care Professions Council in the UK. Rose is currently wrapping up her Ph.D. thesis on the direct, indirect and psychosocial costs in caregivers of children with AMC. Outside research, she enjoys reading novels, writing poems, travelling, and podcasting.

Ms. Kristen Donlevie

Kristen Donlevie is an occupational therapy doctoral student at Boston University who has distal arthrogryposis. She recently finished her doctoral clinical rotations, with experience treating adults in inpatient and outpatient settings, and in acute care pediatrics at Boston Children’s Hospital. The culminating portion of her degree, her capstone, is focused on the development of an infographic tool for adults with AMC to enhance their experiences with healthcare practitioners. Outside of her doctoral degree, Kristen most enjoys time outside by any body of water, baking, reading, and being with family and friends. Last year was her first year as an attendee at the AMCSI conference and she is excited to be back!

Ms. Ahlam Zidan

Ahlam Zidan is a Ph.D. candidate in Rehabilitation Sciences at McGill University (Canada). Her master’s degree from the University of Nottingham (UK) focused on the gross motor function of children with Cerebral palsy. Currently, Ahlam’s Ph.D. research aims to validate common mobility measures and explore the contextual factors associated with the developmental trajectory and mobility of children with AMC using a Shriners-funded AMC registry across 8 sites. Outside of study, Ahlam enjoys travel, coffee, tennis, and adrenaline activities like skydiving.

Dr. Phillip Gaimpietro

Philip F. Giampietro, MD, PhD, is currently the Asok K. Ray, M.D. FRCS (EDIN) and Purnima Ray Endowed Professor of Pediatrics and Section Chief of Medical Genetics in the Department of Pediatrics at University of Illinois-Chicago School of Medicine. He received his B.S. in Biological Sciences at State University of New York at Stony Brook, Doctorate in Biomedical Sciences at the City University of New York and M.D. at the State University of New York at Stony Brook. Dr. Giampietro completed his internship in Pediatrics at the State University of New York at Stony Brook, a residency in Pediatrics at Long Island Jewish Medical Center, and a Fellowship in Medical Genetics at Weil Medical College of Cornell University. Throughout his career, he has been active in the education of medical students, genetic counseling students, physician assistants, and pediatric residents and fellows. Prior to his current position, Dr. Giampietro held positions at Rutgers -Robert Wood Johnson Medical School, Drexel University College of Medicine, University of Wisconsin- Madison, Marshfield Clinic, Marshfield Clinic and Weil Medical College of Cornell University. Dr. Giampietro’s research interests include dysmorphology and birth defects, in particular the genetics of congenital and idiopathic scoliosis. He has worked closely with orthopedic surgical colleagues, clinical and molecular geneticists, and epidemiologists to better understand genetic and environmental contributions to these conditions.

Dr. Fran Guardo

Fran Guardo, MEd, MPT, DPT, BSPTS C1&2 Director of Rehabilitation for the Paley Orthopedic and Spine Institute (POSI) since 2009. She is a sought-after speaker in the field of Rehabilitation of Limb Lengthening and Treatment of Arthrogryposis, where she trains therapists and surgeons internationally. She has authored multiple book chapters, presents nationally and internationally, and is an adjunct professor for Nova Southeastern University, where she lectures in the Physical Therapy Department.

Ms. Nancy Quinn

Nancy Quinn, OTR/L is the Lead Occupational Therapist with Paley Orthopedic and Spine Institute. She joined the team in 2023, and applies her more than 20 years of diverse pediatric experience to the treatment of children with arthrogryposis. Her career has focused on the treatment of children with acquired and congenital limb differences. Previously she served as a Clinical Specialist for a large children’s hospital where she worked extensively with children with Brachial Plexus Birth Palsy, congenital hand anomalies, traumatic injuries of the hand and upper extremity, and infants with congenital heart disease. Nancy is a Certified Lymphedema Therapist and is certified in administering the Mini-Assisting Hand Assessment (Mini-AHA), the Hand Assessment for Infants (HAI) and is a master splint fabrication and teaching.

Ms. Jan Shea

Jan Shea, MSW, joined up with her colleagues at Virginia Commonwealth University’s Center on Transition Innovations in 2014 when she relocated to Richmond, VA from the Appalachian Mountains of Northeast Tennessee. Jan brought her background of juvenile justice and mental health to the team along with the invaluable skill set of spreading office cheer. Over the past 10 years, Jan has served across many projects within CTI. Her work ranges from supporting young adults with an intellectual disability pursuing a inclusive higher education certificate; serving as the program coordinator for a project exploring mental health supports for transfer students in Virginia; and as a Technology and Employment Coordinator for women with TBI/SCIs. When Jan isn’t working at CTI, she can be found attempting to paddle board in the waters around Greater Richmond and enjoying time with her family.

Dr. Sarah Nossov

Sarah Nossov, M.D., is an orthopedic surgeon at Shriners Children’s Philadelphia. Dr. Nossov received her undergraduate degree in fine arts and a minor in computer science from Binghamton University. She then enrolled in a post-baccalaureate premedical program at Goucher College. She earned her medical degree as a distinguished scholar at University of North Carolina at Chapel Hill School of Medicine. In her first week of medical school, she was called to assist at a field hospital in Louisiana after Hurricane Katrina due to her emergency medical training. It was there that she worked side by side with volunteer orthopedic surgeons and her interest in bone health began — within the context of her desire to develop her commitment to community service.

Dr. Lisa V. Wagner

Dr. Lisa V. Wagner DHS, OTR/L received her OT degree from the Medical University of South Carolina and her doctorate from the University of Indianapolis. Working for Shriners Hospitals for Children for the past 33 years has allowed Lisa to participate in various research projects resulting in peer-review articles, book chapter and the ability to speak nationally and internationally. She has co-developed three distinct outcome measures including the UBET, SHUEE and SCUES. She is a clinical instructor for the Assisting Hand Assessment. Passionate about children with AMC, she is currently collaborating on an outcome assessment for better understanding of the upper extremities in AMC and the development of rehabilitation guidelines for AMC.

Ms. Megan Mitchell

Megan Mitchell is an experienced attorney specializing in education civil rights and defense. Prior to the creation of her firm, Ms. Mitchell worked as an Attorney Advisor for the U.S. Department of Education in the Office for Civil Rights, known commonly as OCR. OCR is the branch of government tasked with enforcing Title II, Title VI, and Title IX at the federal level. In her current practice, Ms. Mitchell endeavors to ensure equitable access to education for all students, spanning both K-12 and post-secondary settings. She collaborates with K-12 families to safeguard their entitlement to a free, appropriate public education, crafting innovative and effective 504 plans and IEPs. Through her advocacy, Ms. Mitchell staunchly defends every student’s right to an inclusive learning environment. Ms. Mitchell earned her Juris Doctor degree from Emory University School of Law. At Emory Law, she served as Student Body President and was the sole student member of the university’s Board of Directors. Ms. Mitchell received her undergraduate degree from the University of North Carolina where she earned a double major in Political Science and International Studies. Ms. Mitchell lives in Atlanta, GA with her family

Ms. Tricia Bucci

I have been a physical therapist at Shriner’s Childrens in Erie, PA and now at Shriners Children’s in Greenville, SC for a combined 26 years. Areas of focus in my career have included; training in the French Functional Method of Treatment for clubfeet, a strong interest and history of education in the treatment of torticollis and plagiocephaly, and now currently serving as a member of the Greenville Shriners Children’s AMC team with several years of experience working with and learning from children and teens with AMC.

Ms. Jaccalyn Owens

Jaccalyn received her Master’s in Prosthetics and Orthotics from the Georgia Institute of Technology in 2016. She is ABC-certified and state licensed in orthotics and prosthetics. She has been in the POPS departments with Shriners Children’s Hospital – Greenville since 2022. Her career focus areas have been prosthetics and higher-level lower extremity orthotics in the pediatric population. She is now serving as part of the AMC team at Shriners Children’s Hospital – Greenville.

Mr. Matthew P. Cavedon

Matthew P. Cavedon is an AMCSI board member and the Robert Pool Fellow at the Center for the Study of Law and Religion at Emory University. A graduate of Harvard College and Emory, he has worked in constitutional litigation and as a public defender. He clerked for a federal district court and the Supreme Court of Georgia. Cavedon’s academic work focuses on criminal law, law and religion, and constitutional law.

Dr. Arun Hariharan

Dr. Arun Hariharan is a pediatric orthopedic and spine surgeon at the Paley Institute, specializing in complex spinal deformities, including those found in arthrogryposis. He completed his medical education at the University of Michigan, followed by an orthopedic residency at the University of Maryland and Johns Hopkins, and pediatric orthopedic and spine fellowships at Nemours/A.I. duPont Hospital for Children and in Auckland, New Zealand. Actively involved in research and education, Dr. Hariharan has numerous publications and presentations and is a member of the Scoliosis Research Society (SRS) and the Pediatric Orthopaedic Society of North America (POSNA). His passion for patient care and innovation ensures the highest quality of care for his patients. Outside of his professional work, Dr. Hariharan enjoys spending time with his family and cheering for Michigan, Go Blue!