Location: Info coming soon.
Location: Info coming soon.
Location: Foyer
Locations:
Location: Paul D. Fraim Center for Excellence
Location: Outside of the Paul D. Fraim Center for Excellence
(Food & drink on your own.)
Locations:
From childhood to adulthood – disability has shaped who Jennifer Kumiyama is and how she shows up for herself and others like her. She proves that disability is an inherent part of the human experience that affects all communities. Rooted in disabled joy, Jennifer continues to focus on activism that uplifts the disabled community by continuing to fight for equitable legislation at the local, state and federal levels, independent living and intersectional disability visibility.
Location: Salon B
In this session we will review the nuts and bolts of a genetic evaluation in the context of arthrogryposis multiplex congenita. We will discuss the components of a genetic evaluation including what historical and physical examination findings are important. The different types of genetic testing utilized in clinical practice and types of results which are expected along with limitations of testing will be highlighted. We will discuss categories of genes found to be associated with AMC. The process of genetic counseling will also be discussed.
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: Salon H
(On your own.)
Location: Salon B
Arthrogryposis multiplex congenita is a term to describe a spectrum of disorders that all have in common babies born with multiple joint contractures. This talk is an overview, designed to provide a structure to understand arthrogryposis, the conditions that cause it, and the differences between diagnoses. There will be special focus on the treatment of foot deformities (clubfoot and congenital vertical talus), hip deformities (contractures and congenitally dislocated hips), and knee contractures (both flexion and extension). Scoliosis will also be discussed, with an emphasis on different forms of treatment.
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.
Location: Salon H
Location: Salon B
From childhood to adulthood – disability has shaped who Jennifer Kumiyama is and how she shows up for herself and others like her. She proves that disability is an inherent part of the human experience that affects all communities. Rooted in disabled joy, Jennifer continues to focus on activism that uplifts the disabled community by continuing to fight for equitable legislation at the local, state and federal levels, independent living and intersectional disability visibility.
Dr Sara Lemin will present updates in the field of obstetrics and the prenatal diagnosis of AMC. She will review recently published research studies, including surveys that many conference attendees participated in. She will discuss the current guidelines for screening for AMC during pregnancy and opportunities for improvement. She will share new resources, including the 2025 Arthrogryposis New Parent Information Packet.
Location: Salon H
Location: Salon B
Join us for an inspiring session highlighting the power of adaptive sports to break barriers, foster inclusion, and enhance quality of life for individuals with disabilities. Through real stories and program examples from the University of Utah’s TRAILS initiative, we’ll explore how people of all abilities—alongside their families and able-bodied peers—can experience the joy, challenge, and connection that sports provide. Whether on snow, water, or wheels, adaptive recreation proves that the outdoors is for everyone. Come see what’s possible when we move together.
Spinal deformities in arthrogryposis present unique challenges due to rigid contractures, poor muscle function, and varied underlying causes. This session will explore modern surgical and non-surgical approaches to managing scoliosis and kyphosis in arthrogryposis, emphasizing the importance of early diagnosis and multidisciplinary care. We will discuss recent advancements in spine surgery, including techniques to maximize correction while minimizing complications in this high-risk population. Topics will include the role of early bracing, surgical strategies such as posterior spinal fusion and growth-friendly constructs, and the impact of spinal alignment on overall function and mobility. Case studies will illustrate decision-making in real-world scenarios, highlighting the balance between achieving correction and maintaining long-term stability. The session will also address ongoing research and emerging technologies aimed at improving spine care for children with arthrogryposis. Attendees will gain insights into optimizing treatment strategies to enhance quality of life for patients with complex spinal deformities.
Location: Salon H
Want to learn more about rehabilitation for children with AMC? Our team has partnered with clinicians, people with AMC and families from several countries in the world to co-develop recommendations for rehabilitation. We provide 16 recommendations to address early intervention and motor development, muscle and joint function, orthotics, mobility, participation in areas of life, pain, psychosocial wellbeing, and perioperative rehabilitation. These areas were identified by clinicians, youth with AMC and caregivers as important and were therefore prioritized. We expect that these recommendations will contribute to improving child- and family-centered practice and health outcomes. Next steps include sharing the recommendations and implementing them in practice to promote equity of care. I am looking forward to sharing this work on behalf of our international team.
The goal in treatment of the upper extremities in arthrogrypotic children is to provide maximum ability for them to perform activities of daily living (ADL’s) with the least amount of assistance. Every child has a unique presentation so treatment needs to be individualized based on clinical findings.
Head towards Salon D/E, you will see everyone & where to go from there.
Locations:
How to achieve ambulation and how to set realistic goals for the child and their family.
You know you have questions. We have a panel of experts across multiple specialties ready to discuss your questions and concerns.
Location: Salon B
How Adaptive Sports Unleash Mental Strength and Unstoppable Confidence,” will define adaptive sports through diverse examples. The presentation will delve into how these activities foster crucial social connections, reduce stress, and cultivate profound self-belief and independence. Ultimately, it aims to inspire and empower attendees to explore adaptive sports as a pathway to greater joy, personal growth, and true access within the broader adaptive sports world.
The old and the new: maximizing independence and function for kids
Location: Salon B
Spinal deformities in arthrogryposis present unique challenges due to rigid contractures, poor muscle function, and varied underlying causes. This session will explore modern surgical and non-surgical approaches to managing scoliosis and kyphosis in arthrogryposis, emphasizing the importance of early diagnosis and multidisciplinary care. Dr. Arun Hariharan will discuss recent advancements in spine surgery, including techniques to maximize correction while minimizing complications in this high-risk population. Topics will include the role of early bracing, surgical strategies such as posterior spinal fusion and growth-friendly constructs, and the impact of spinal alignment on overall function and mobility. Case studies will illustrate decision-making in real-world scenarios, highlighting the balance between achieving correction and maintaining long-term stability. The session will also address ongoing research and emerging technologies aimed at improving spine care for children with arthrogryposis. Attendees will gain insights into optimizing treatment strategies to enhance quality of life for patients with complex spinal deformities.
Location: Salon H
(On your own.)
Location: Salon B
Driving Rehab Solutions – Featuring 2 recent cases where AMC was the primary
diagnosis.
We all strive for autonomy and independence, but what does this look like in our real day to day lives? For AMC, independence has multiple layers. In this session, we will consider the balance of self-awareness, adaptive equipment, social considerations and more in our quest to be independent people living in an evermore connected world. Come ready to share and discuss your quest for autonomy.
Location: Salon B
There are many new words and ways things are done in college – especially for a student with a disability. What’s Different? How do you get help? What does ____ mean? Why go on a college tour? Who at college can help me? This presentation, “Beyond the Threshold: Embracing College Opportunities,” is designed to initiate those conversations. Through interactive discussion, hearing from experts – students with disabilities navigating college, research, and professional knowledge – we’ll discuss the college experience. We will explore the differences between college and high school, provide practical tips for college preparation, help you become confident in exploring various college options, and offer a chance to ask those burning questions about college. This presentation is designed to help students and their families understand what comes after graduation and how to navigate that transition with a plan for success.
It’s not too late: improving function and appearance in adults
Location: Salon H
Location: Salon B
Pain perception is unique to each individual but what we know is that those who have AMC experience pain. This session will delve into the types of pain that can be experienced and work on some non-medication based strategies to support care.
Every person with arthrogryposis has unique needs to optimize their functionality. This presentation will address surgical options to improve wrist, hand, and thumb function in patients with arthrogryposis. Considerations for determining who is an appropriate candidate for surgery will be discussed. Participants will gain better understanding of upper limb treatment options. The need for individualized goals and treatment plans will be highlighted.
Location: Salon D/E/F/G/H
Location: Salon G/H
Locations: 4th Floor LOBBY
Locations: Salon A
Location: Salon D/E
Location: Salon G/H
Location: Salon D/E
Location: Salon D/E
Location: Salon F/G
(Both Days)
Have fun exploring outer space with space-themed crafts and fun activities. Part 1 and Part 2 are the same session – please choose the one session that best fits your schedule
Have fun exploring outer space with space-themed crafts and fun activities. Part 1 and Part 2 are the same session – please choose the one session that best fits your schedule
Blast off to Space for our annual glow party! 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.
Blast off to Space for our annual glow party! 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.
Come be the doctor for the day and make your own stuffed animal to care for! All ages of kids and teens welcome to come and stuff your own bear!
sponsored by Dr. Feldman and the unLIMBited Foundation
Who wants to hear a story? Join Ms. Tammy for an interactive story time with lots of fun books and stories. All ages welcome.
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.
Attend Part 1, Part 2, or both! This session will continue for 2 hours with no break in between. All doctors, therapists, and other medical professionals are invited to come play games with our kids and families. 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.
Attend Part 1, Part 2, or both! This session will continue for 2 hours with no break in between. All doctors, therapists, and other medical professionals are invited to come play games with our kids and families. 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.
Matthew & Julie Cavedon
Dr. Reid Nichols
Gianmarco Martuscelli
The Martuscelli Restaurant Group
Ewa Okla
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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