Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI

18th Annual AMCSI Conference Photo Gallery

Ted Houser — Sat, 20 Jan 2024 22:57:04 +0000

18th Annual AMCSI Conference Photo Gallery

July 3-5, 2023
Columbus, Ohio

Thank you to all that attended!

The post 18th Annual AMCSI Conference Photo Gallery first appeared on Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI.

19th Adaptive Sports

Ted Houser — Tue, 16 Jan 2024 18:48:47 +0000

Adaptive Sports Registration

Are you curious or interested in the outdoors? Then sign up to get involved in some adaptive sports fun on July 3rd, before the 19th Annual AMCSI Conference in Atlanta, Georgia!

Deadline to sign up has been extended to June 15th!

Anyone who signs up & we are over the limit, will go on a waitlist. So Please sign up as soon as possible to get in before then!

Reminder: Stay hydrated during & before your water activities.
All fields are required.

Photos on this page may not reflect activities taking place during the 19th Annual AMCSI Conference, please see the form below.

>>> Click Here To Donate To Adaptive Sports <<<

All (required) (*) documents must be sent to info@amcsupport.org

Your application will not be processed until all required items are received.
Please do not email to check on the status of your application. We will reach out you if further information is needed.

The Adaptive Sports Application is now closed.

The post 19th Adaptive Sports first appeared on Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI.

19TH Annual AMCSI Conference Program

Ted Houser — Wed, 05 Jun 2024 20:08:09 +0000

19th Annual AMCSI COnference Program Link

Please CLICK HERE (or the Program Cover Image) to view/download a PDF file of the Conference Program. You can then enlarge the PDF file on your devices.

The post 19TH Annual AMCSI Conference Program first appeared on Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI.

19th Annual AMCSI Conference Sessions

Ted Houser — Tue, 30 Jul 2024 17:59:37 +0000

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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19th Annual AMCSI Conference Volunteer

Ted Houser — Fri, 10 May 2024 00:09:20 +0000

Conference Volunteers

Sign up by clicking the button below to volunteer at the AMC Annual Conference in Atlanta, GA on July 3-6, 2024. All times are in EST.

Please read the information below as some changes and updates are included.

Volunteers must be over 16 to volunteer alone. Pre-teens may volunteer *with* a parent or designated adult in certain locations.

Volunteers are encouraged to attend the volunteer training on Wednesday at 2:30pm. Any volunteers who attend the training AND volunteer for at least 4 hours will receive an exclusive lanyard (must meet both requirements). Volunteers who attend the training will also be granted special access to a special volunteer-only early registration line for conference at 3:30pm immediately following the training.

This sign-up will not work well on a mobile device – it is best to use a computer.

If you have any questions, please email volunteer.amcsi@gmail.com Thank you for helping make the AMC conference amazing! We couldn’t do it without you!

The post 19th Annual AMCSI Conference Volunteer first appeared on Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI.

19th Annual AMSCI Conference Photo Gallery

Ted Houser — Thu, 11 Jul 2024 22:11:08 +0000

19th Annual AMCSI Conference Photo Gallery

July 3-6, 2024
Atlanta, GA

Thank you to all who attended!

The post 19th Annual AMSCI Conference Photo Gallery first appeared on Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI.

19th Important Documents

Ted Houser — Tue, 09 Jan 2024 05:24:35 +0000

Important Documents

Code of Conduct

We are committed to providing a friendly, safe and welcoming environment for all, regardless of gender, sexual orientation, disability, ethnicity, or religion. This code of conduct outlines our expectations for participant behavior as well as the consequences for unacceptable behavior.

We invite all sponsors, volunteers, speakers, attendees, media, exhibitors, and other participants to help us make the AMCSI Conference a safe and positive experience for everyone.

All event participants must abide by this code of conduct at all conference venues and conference-related social events.

All decisions about appropriate or inappropriate behavior are at the sole discretion of the event organizers AMCSI Board of Directors & Planning Team.

EXPECTED BEHAVIOR

Be considerate and respectful.
Refrain from demeaning, discriminatory, or harassing behavior and speech.
Be mindful of your surroundings and of your fellow attendees. Alert conference organizers if you notice a dangerous situation or someone in distress.

UNACCEPTABLE BEHAVIOR

Unacceptable behavior includes but is not limited to intimidating, harassing, abusive, discriminatory, derogatory, demeaning behavior, inappropriate physical contact, and unwelcomed sexual conduct by any attendees of AMCSI and related events like the after-hours networking parties.
Harassment includes offensive verbal comments related to gender, sexual orientation, race, religion, or disability; inappropriate use of nudity and/or deliberate intimidation, stalking or following; harassing photography or recording in an aggressive manner; disruption of talks or other events.
Inappropriate Clothing for Family Friendly Event
Verbal, Written or Physical Abuse (pushing, shoving, or use of any physical force), threats, whatsoever against any person, which in any way creates a disturbance that is disruptive or dangerous.
Possession of any item that can be used as a weapon and may cause danger to others.
Any lewd behavior or offensive language, including but not limited to sexually explicit language, materials or conduct, profanity, obscene gestures, racial, religious, gender, or ethnic slurs.
Drinking alcohol outside designated areas. Please drink responsibly.
Possession or use of any illegal substance. AMCSI does not tolerate the use or abuse of illegal substances anywhere in the venue.
Smoking in non-designated areas.
Assembling for the purpose of, or resulting in, disturbing the peace, or committing any unlawful act.
Failure to obey any rules or regulations of the Venue.

CONSEQUENCES OF UNACCEPTABLE BEHAVIOR

Unacceptable behavior will not be tolerated.
Anyone asked to stop unacceptable behavior is expected to comply immediately.
If a participant engages in unacceptable behavior, the conference organizers may take any action they deem appropriate, up to and including expulsion from the conference without warning or refund.

WHAT TO DO IF YOU WITNESS OR ARE A VICTIM OF UNACCEPTABLE BEHAVIOR

If you are subjected to unacceptable behavior, notice that someone else is being subjected to unacceptable behavior, or have any other concerns during the event, please notify a member of AMCSI Board of Directors and Planning Team as soon as possible. All reports will remain completely confidential.

The AMCSI Board of Directors and Planning Team will be available to help participants contact hotel venue security and/or local law enforcement as deemed necessary, or to otherwise assist victims in reporting unlawful unacceptable behavior.

If you have any questions, please contact the planning team at

1-805-55-AMCSI (1-805-552-6274)

info@amcsupport.org

General Liability Waiver

All persons participating in the 2024 AMCSI Conference at the Hyatt Regency Atlanta in Atlanta, Georgia (hereinafter referred to as “Event”) held on July 3 – July 6, 2024 are required to read, agree to, and sign this waiver before participating.

I hereby release and forever discharge Arthrogryposis Multiplex Congenita Support, Inc., its Board of Directors, and any person working jointly and severally, volunteers, directors, officers, administrators, agents, and assigns (hereinafter referred to as “the Releasees”) from all liability for any and all claims or causes of action of any kind or nature whatsoever and particularly on account of any injuries, both to person and property, which may result from or develop in the future as a result of my participation in the Event.

I further agree that if, despite this Release and Waiver of Liability I or any person on my behalf makes a claim against the Releasees, I will indemnify, save and hold harmless the Releasees from any monetary losses including, but not limited to, legal fees and litigation costs. This release is binding on my heirs, executors, assigns, and administrators.

The undersigned is aware of the risks of participation in the Event. The undersigned assumes all risks. The risks include those foreseen and unforeseen, known and unknown. We may also share or disclose your data to comply with a court order or other legal obligation, to enforce the Site terms of use, and to protect the rights, property or safety of our users and other third parties.

We may disclose data to government or law enforcement officials or private parties as we determine, in our sole and absolute discretion, is necessary or appropriate to respond to claims or to comply with legal processes, to comply with laws, regulations or ordinances or to prevent or stop illegal, unethical or actionable activity.

If a minor child accompanies me and participates in the Event, I shall be responsible for supervising such minor child (or children). I agree to indemnify the Releasees from and against any claims for damages or injuries (to the child or third parties) to the extent such claims arise from or are related to my failure to exercise due care in supervision.

I acknowledge that photographs may be taken of persons taking part in the Event by AMCSI and waive any rights of compensation or ownership there to. I hereby authorize and consent to either or both of the Releasees, making make use of any Event-related photographs in which I and/or my minor child or children may be included for purposes of news reporting and/or public relations and, further, authorize either or both of the Releasees to publish and/or re-publish such photograph or photographs in the fundraising materials and literature in connection with the Event and other fundraising events.

I hereby declare that I:

Have read, understood, and voluntarily accept the terms and conditions of this document.
Recognize my right to seek legal counsel before submitting my registration form.
Am waiving legal rights and in knowing this, I agree to it of my own free will.
I am aware that my agreement to this Waiver and Release of Liability is in effect once I submit this registration form.

Please submit your full name on registration form, if you accept.

Photo Release

1. Video/audio capture of AMCSI sessions and activities is strictly prohibited without express written permission from BOTH: 1.) the session presenter/s, person/s, and 2.) AMCSI. AMCSI reserves all video/audio taping and photography rights at conferences and events. No video or audio taping is permitted in session rooms.

2. Amateur video/audio capture and still photographs are permitted of ambient environments, informal exchanges, and sessions and activities not organized by AMCSI, outside of AMCSI session rooms, provided that appropriate permissions have been granted by the parties affected. AMCSI assumes no liability for copyright and/or intellectual property violations that may occur as a result.

3. Under no circumstances may any length or quality of video/audio capture of AMCSI sessions be used for marketing, advertising, or commercial purposes without express written permission from BOTH: 1.) the session presenter/s, and 2.) AMCSI.

4. Private recording is not allowed without permission. The Board of Directors are authorized to halt the creation of unauthorized recordings.

5. Any costs associated with the creation of an audio/video record must be incurred by those wishing to create the audio/video recording unless funding is specifically authorized by the Board of Directors of AMCSI.

6. Audio/video material created at an AMCSI event shall not be used by the recorders for financial gain without permission from the Board of Directors of AMCSI.

7. AMCSI will be provided with a copy of each instance of audio/video recording created at an AMCSI event, within 30 days of the creation of the recording.

8. Any costs associated with the creation of an audio/video record must be incurred by those wishing to create the audio/video recording unless funding is specifically authorized by AMCSI.

9. AMCSI is authorized to reuse the copy in a non-profit manner that is consistent with AMCSI’s Mission and Vision.

10. Requests for audio/video capture of AMCSI Events may be made by emailing bod@amcsupport.org

The post 19th Important Documents first appeared on Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI.

2023 Together Tuesdays Sessions

Ted Houser — Sun, 21 Jul 2024 17:19:02 +0000

Together Tuesdays

2023 Together Tuesdays Sessions

>>> Back to Together Tuesdays main webpage <<<

Together Tuesdays – AMC Adults

In this session, we are joined by our adult friends with AMC!

Together Tusdays & Marty & Friends

In this session, we will join special guest Marty Sheedy from the Project Scissor Gait Foundation (@projectscissorgait) & Friends!

Together Tuesday – AMC Community

In this session, we will be joined by our adult friends with AMC!

Together Tuesdays – Misha & Friends

In this week’s session, we will be joining special guest Misha Dream Walker, AMCSI’s International Ambassador & friends!

Together Tuesday – Dr. Maureen Donohoe & Friends

In this week’s session, we will be joined by Dr. Maureen Donohoe & some of her friends, as we discuss @givingtuesday & share stories about how AMCSI has helped others!

Together Tuesdays – David Solano

In this week’s session, we will be joined by David Solano, a Sewall alumnus & board member, talking about his new book “Anything is Possible: A Journey of Resilience”

Together Tuesdays – Giving Tuesday & AMC Research

In this week’s session, we talked about Giving Tuesday & AMC Research!

Together Tuesdays – Fundraising

In this week’s session, we discuss fudnraiser to bring awareness to Arthrogryposis, with tips, ideas and more!

Together Tuesdays – Did You Know About The Links On The Website

In this week’s session, we talked about the AMCSI website, where links are, how to utilize all of resources on it and more!

Together Tuesdays – Mini Meetups – Importance of the smaller local gatherings

In this week’s session, we talked all about mini-meetups and more!

Together Tuesdays – Meet & Greet

In this week’s session, we introduce the AMCSI Team, Borad of Directors and more!

The post 2023 Together Tuesdays Sessions first appeared on Arthrogryposis Multiplex Congenita Support, Inc. | AMCSI.

2024 Together Tuesdays Sessions

Ted Houser — Tue, 07 Jan 2025 18:58:09 +0000

Together Tuesdays

2024 Together Tuesdays Sessions

>>> Back to Together Tuesdays main webpage <<<

Together Tuesdays

We welcome the new puppy on the show, talk about the holidays & more!

Join us as we discover the results of apple jelly and white rice, talk about Grateful Tuesday, and more!

To join the recordings, please register today at https://amcsupport.org/together-tuesdays/#TTreg

Together Tuesdays

A chill episode of hanging out with our close friends!

Join us as we discover the results of apple jelly and white rice, talk about Grateful Tuesday, and more!

To join the recordings, please register today at https://amcsupport.org/together-tuesdays/#TTreg

Together Tuesdays

Achievements, Building Resources, & AMC Life in General

Join us as we discover the results of apple jelly and white rice, talk about Grateful Tuesday, and more!

To join the recordings, please register today at https://amcsupport.org/together-tuesdays/#TTreg

Together Tuesdays

Achievements, Building Resources, & AMC Life in General

Join us as we discuss achievements, building our own resources for group support, how the social media plane is changing & evolving, & AMC life in general.

To join the recordings, please register today at https://amcsupport.org/together-tuesdays/#TTreg

Together Tuesdays

Navigating the World of Independent Living

Join us as we get caught up with replacing a caretaker, how that process worked out, the dynamics of AMC families, & AMC Life.

To join the recordings, please register today at https://amcsupport.org/together-tuesdays/#TTreg

Together Tuesdays

Navigating the World of Independent Living

Join us as we discuss the challenges of independent living, letting a caretaker go & figuring out ways to find the right fit. It’s not always easy to do, especially if you like the caretaker as a person, but your responsibilities for them regarding your needs are not fully met.

To join the recordings, please register today at https://amcsupport.org/together-tuesdays/#TTreg

Together Tuesdays

We’re Back!

This time, Together Tuesdays is taking a new approach. Expect a more relaxed, less restrained style! Join us for this new chapter & tune in whenever it suits you!

To join the recordings, please register today at https://amcsupport.org/together-tuesdays/#TTreg

Together Tuesdays

Join us on Tuesday! In this session, we talked about AMCSI News, including our Facebook groups link webpage, mini meetups, upcoming fundraisers, and possibly doing an AMC dating episode!