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Welcome to the 19th Annual AMCSI Conference in Atlanta, Georgia!

Unleash Your Potential: Discover the Superpower of Adaptive Recreation

Imagine: Pushing your limits further than ever before. Uncovering hidden strengths that go beyond daily life. Feeling a surge of independence and confidence you never knew existed. For me, adaptive sports transformed my life. As a woman with AMC, I craved self-sufficiency and independence. Adaptive sports opened a whole new world of possibilities. In just 3 years, I’ve completely changed my life and have become healthier and happier than ever. But here’s the shocker: It took me 40 years to find this. That’s why I’m here. To tell you, it’s never too late. Even if you’re scared, take that first step. Trust the process and see what happens when the impossible becomes possible.

What is a Genetic Evaluation and How Will it Benefit my Child?

In this session we will review the nuts and bolts of a genetic evaluation. We will discuss the components of a genetic evaluation including what historical and physical examination findings are important. We will delve into the different types of genetic testing utilized in clinical practice and discuss types of results which are expected along with limitations of testing. The process of genetic counseling will also be discussed.

Hip in AMC

Contractures of the hip are present in almost 90% of AMC children. Hip dislocations are seen in 30% to 40% of AMC children. The purpose of this talk is to clarify some of the medical jargon that surrounds this complex joint. There is no “one way” to treat an AMC hip, so the aim of this talk is to bring a better understanding of what the surgeon is thinking when planning surgery.

In “Moving the Curve: Modern Approaches to Spinal Care in Arthrogryposis

Dr. Arun Hariharan will explore the latest advancements in treating spinal deformities associated with arthrogryposis. The talk will cover innovative surgical techniques and treatment strategies that improve patient outcomes. Dr. Hariharan will share insights from his experience and research in pediatric spine surgery. Attendees will learn about the integration of cutting-edge technologies and personalized care plans in managing complex spinal conditions in AMC. This presentation aims to enhance understanding and collaboration among healthcare professionals dedicated to improving the lives of patients with arthrogryposis.

Adaptive Sports

Adaptive recreation can be broadly defined as any recreational activity that is modified to enable people with physical or mental disabilities to participate in said activity. Adaptations could range from something as simple as using an orange bib to help guide someone with a visual impairment to a customized piece of equipment that allows for physical expression in that recreational environment. This brings up the question, “How can I participate?” If you are looking to answer this question or learn more about what a recreational activity may look like for you, stop by for this hour-long open informational discussion with TRAILS Adaptive Sports, TetraAdapt, High Country Adaptive Sports, Arizona Adaptive Water Sports, and Paradox Climbing. Each program has some informational videos and lots of knowledge on how everyBODY can participate in sports and recreation.

Development milestones in children with AMC:

Understanding and creating new tools. The development of a child is determined by complex interactions between various factors, such as the severity of the child’s condition and environmental factors. Better understanding how children with AMC reach developmental milestones was shared as an important need by families of children with AMC, and having tools to evaluate children with AMC was voiced as an important deliverable for clinicians. This session will describe: a) The development of children with AMC between 0-5 years of age using data from an AMC registry of 400 children across North America. b) The SHAPE-UP (Shriners Hospital Arthrogryposis Pediatric Evaluation-UPper Extremity) tool to evaluate the upper extremity in children 1-21 years of age. This talk will shed light on how this information can be useful for parents, clinicians, and researchers working with a child with AMC.

Arthrogryposis 101:

Arthrogryposis multiplex congenita (AMC) is a term to describe a spectrum of disorders that all have something in common – the babies were born with multiple joint contractures. This talk is designed to provide a structure to understand arthrogryposis, in terms of its causes, and differences between the common types of AMC. In that way, the information gained should provide participants with a knowledge foundation to help the get the most out of other medical talks in the conference. It will also touch upon some of the procedures done to correct lower extremity deformities.

Upper Extremity Orthotics EVERYONE?

Orthotics (Splinting) are a part of AMC journey. However why do we wear them? What is their purpose? Are there other options? This session will review the basics of orthotics from the general components/materials to the varied purposes of orthosis. Participant discussion is encouraged throughout especially with alternative options to UE splinting and suggestions for handling our little Houdini’s.

Understanding ABLE Accounts & Special Needs Trusts

Learn how these two pillars of special needs planning may be used to maximize resources. Topics include protecting government benefits, eligibility requirements, guidelines for use, and funding options. Information will be presented simply and practically on how you might best provide quality of life and a lifetime of care. Participants are welcome to a resource kit and complimentary consultation.

Lower Extremity Deformity and Arthrogryposis

I am so excited to talk with everyone about the basics of what defines deformity of the legs including angular deformity like knock knees and bowlegs. I will teach you how deformity doctors figure out how to balance a leg to a more anatomic position. We will also discuss the implications of rotational deformity to the hips, knees, and feet and some features that are specific to arthrogryposis. I will explain some of the surgical options that may be appropriate for these problems. We will touch on hip, knee, and ankle contractures, but these will be covered more in depth by other speakers.

What to know about lower extremity amputations

A hot topic in arthrogryposis is amputation. This session will review the many amputation options for those with lower extremity limb deformity. Not all have positive outcomes with this surgical intervention. This session will address types of amputations, prosthetic components, and the strategies needed for success and independence.

Come join a diverse panel of Adults with AMC as they discuss their hobbies and interests and some tricks and tips on how to make it work!

The foot is the most commonly affected area in persons with arthrogryposis.

Because the foot and ankle complex is composed of 28 bones and 33 joints, it can also be one of the more tricky aspects of arthrogryposis to manage. During this session we will discuss everything from clubfoot to congenital vertical talus as well as treatment from infancy through adulthood. We hope this session will be informative to parents and patients alike.

Toolkits for adults with AMC and caregivers

As AMC is rare, individuals with AMC and caregivers of children with AMC may experience challenges in accessing care, getting information, and finding supports. To address these challenges, this session will present the work of two trainees on: a) The developmental of a toolkit for adults with AMC using focus groups with knowledge users and experts; b) Describing the caregiving experience in AMC using information collected from a survey and interviews across 4 countries. This session will provide tools to raise awareness on the needs of adults with AMC and caregivers of children with AMC. We are looking forward to your feedback during this session in order to refine our projects!

Spine:

The incidence of scoliosis in children with arthrogryposis multiplex congenita (AMC) is estimated to be about 20% over the course of childhood. Babies can be born with curves, or they can develop a curve at any time during childhood. In this talk, we will discuss the various ways that spine curves can present, and options for treatment, including bracing, spine casting, non-fusion (“growth friendly”) implants, and spinal fusions.”

Make Stuff and Love People – Creating Assistive Technology Solutions in Minutes

This session will discuss new methods, materials and resources for creating hundreds of assistive technology solutions in minutes using low-cost materials including Coroplast, InstaMorph, loc-Line, PVC, and 10 different specialty tapes for rapid solution creations. This session will also discuss the importance of embracing the “…ABLE” principle in developing solutions that are: Adjustable, moldable, reuseable, removeable, affordable, washable, collapsible, portable, pliable, repurposeable and more. Learn how to become an AT McGyver, McGyva, or McGyvett for quickly solving every day challenges on the fly.

This presentation will focus on the application of Section 504 and Title II in schools. We will cover the laws protecting physical accessibility in schools, covering aspects such as doors, sidewalks, hallways, parking, and access to facilities for guests, guardians and students. We will discuss the federal laws that apply to public and charter schools and almost all colleges and universities, and how these laws, when correctly implemented, should eliminate barriers to education from pre-k through college and beyond. Additionally, we will review how Section 504 protects students’ fair access to the classroom and day-to-day learning environment – including ways to help schools craft the best 504 plan for an individual student’s specific needs.

Effective therapeutic intervention for individuals with arthrogryposis occurs through a lifetime continuum.

Session attendees will gain an understanding of early intervention strategies and how early intervention is the first and key opportunity to promote movement and independence in children with arthrogryposis. An overview of rehabilitation following surgical interventions will educate the attendee on how children further progress with movement and independence as they grow and mature.

What comes next after high school for students with disabilities.

“Let’s talk about life after high school” is a chance to have a conversation and share resources about what college can look like for yourself/your son/daughter/loved one after high school. This presentation is going to talk about the difference between college and high school, what college accommodations are, tips for prospective students researching colleges, the national movement for inclusive postsecondary education, saving up for college, and setting expectations for college and employment early.

Come join a group of Adults with arthrogryposis as they discuss their diverse careers of choice, and how they were able to achieve their goals.

Simple Solutions to Complex Cases; An Interdisciplinary Approach to Orthotic Care in AMC

This presentation will include case studies of children with AMC and describe the collaboration between physical therapy and orthotics as we work to optimize each child’s mobility and functional skills. This will include detailed videos and pictures of each case study. The goal of the presentation is to describe the interdisciplinary approach used between physical therapy and orthotics and the materials that were used for these complex cases.

This session will be about disability law, especially the right to accessibility in public accommodations and to employment. A good companion to the separate session on disability rights in education.

AMCSI Board Of Directors Meeting in Atlanta, Georgia July 6th, 2025.

19th Annual AMCSI Conference Closing Ceremony with the Lady Karen Przytula, Grand High Priestess

Lady Karen Przytula , the 2023-2024 Grand High Priestess presented AMCSI several checks for $72,892.64 💙😭 So very thankful and honored for being selected for Lady Karen’s special project during her reign! 🙏 And also so thankful to have Karen with us at the 19th Annual AMCSI Conference ! She put in the work ladies ~ ZaHirUDin court would be so proud!
Karen, we love you! Thank you! Thank you! These memories will be forever etched as one of the best moments in the history of our organization!
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