Click on the image below or CLICK HERE to download a PDF of the Floorplans.
Location: Regancy Foyer
Location: Regency V
Location: Bar/Lounge area of Hotel.
(Food & drink on your own)
Location: Regency Foyer
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.
Join me and discover your own potential.
Location: Regency VI-VII
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.
Location: Hanover AB
Location: Hanover C
Location: Hanover D
Location: Hanover E
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.
Location: Hanover FG
Location: Chicago A
(On your own)
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.
Location: Hanover AB
Location: Hanover E
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.
Location: Hanover FG
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.
Location: Hanover AB
Location: Hanover C
Location: Hanover E
This discussion will include a brief overview of the treatment goals and options for improving hand and arm function in children and adults. Volunteers from the audience will then be asked to come up for live demonstration of key examination findings. The goal is to have patients and their families understand the latest advances and what options are open to them.
Location: Hanover FG
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.
Location: Hanover AB
Location: Hanover C
Location: Hanover D
Location: Hanover E
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.
Location: Hanover FG
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.
Location: Hanover AB
Location: Hanover C
Location: Hanover D
Location: Hanover E
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.
Location: Hanover FG
Location: Regency VI-VII
Location: Regency Foyer
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.
Location: Hanover AB
Location: Hanover C
Location: Hanover D
Location: Hanover E
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!
Location: Hanover FG
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.
Location: Hanover AB
Location: Hanover C
Location: Hanover D
Location: Hanover E
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!
Location: Hanover FG
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.”
Location: Hanover AB
Location: Hanover D
Location: Hanover E
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.
Location: Hanover FG
Location: Hanover E
(On your own)
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.
Location: Hanover AB
Location: Hanover C
Location: Hanover D
Location: Hanover E
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.
Location: Hanover FG
“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.
Location: Hanover AB
Location: Hanover C
Location: Hanover D
Location: Hanover E
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.
Location: Hanover FG
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.
Location: Hanover AB
Location: Hanover D
Location: Hanover E
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.
Location: Hanover FG
Location: Regency VI-VII
Location: Regency V
Location: Regency Foyer
Location: Regency VI-VII
Location: Regency V
Location: Regency VI-VII
All Children’s Programing will be located in Regency V room.
Attend either part 1 or part 2 – these sessions are identical. Find your inner super hero while you decorate wearables such as masks, capes, or even yourself with temporary tattoos. Once you get your gear on, make a few other crafts just for fun!
Attend either part 1 or part 2 – these sessions are identical. Find your inner super hero while you decorate wearables such as masks, capes, or even yourself with temporary tattoos. Once you get your gear on, make a few other crafts just for fun!
Attend Part 1, Part 2, or both! This session will continue for 2 hours with no break in between. Drop in for as long as you like. Have fun playing games with new friends, building with legos or
magnet blocks, or just hanging out in a fun social space. This is a
fun, unstructured time to play games with other AMC families.
An AMC conference favorite! Join Chaney Roko for a sing-along of your favorite songs! Kids of all ages are welcome to come sing and dance.
Come meet a real superhero! You never know who you might see!
Who wants to hear a story? Join Ms. Tammy for an interactive story time with lots of fun books and stories. All ages welcome.
Superheros love to dance…. in the dark! Come get some glow gear and dance the afternoon away with glow sticks, black lights and music. This is a drop in session – stay for as long or as short of a time as you like during the two hour session.
First Command Bryan Tuschen
Wosnik Law
Cotto & Cochran Immigration Group
Matt & Julie Cavedon
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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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