2017-12th Annual AMCSI Conference – Las Vegas, Nevada

The 12th Annual Arthrogryposis Multiplex Congenita Support, Inc. Conference was held June 29-July 1 in Las Vegas, Nevada.  AMC is a congenital condition which causes multiple joint contractures and limited or missing muscle tissue leading to reduced range of motion and strength.  AMCSI welcomes not only families but also those in the medical community at the annual Arthrogryposis Conference while providing an opportunity for people affected by arthrogryposis multiplex congenita to exchange ideas and support. During this annual three-day event, nearly 650 attendees joined to listen to medical professionals, motivational speakers, and other service providers from around the ​world to ​share information on “best practices” in the treatment of and living with AMC. Multiple exhibitors showcased products such as robotic feeding devices, new tools for dental care that can benefit individuals affected with AMC, and books and artwork written or created by adults with arthrogryposis. The location and date of the 2018 AMCSI Conference, Columbus, Ohio, July 4-6, 2018, was announced during the closing ceremony.

Speakers

The AMCSI 12th Annual Conference Schedule is under development. The following list of speakers has been released to help attendees plan their travel to the conference.

Please note that the list of speakers is subject to change.

 

KeyNote Speaker:

Dr. Noémi Dahan-Oliel, PhD 
Noémi is an occupational therapist by training, and obtained her PhD in Rehabilitation Sciences from McGill University in 2014. She is a clinician scientist and coordinator of the clinical research department at Shriners Hospital for Children – Canada, and Assistant Professor at McGill University, School of Physical and Occupational Therapy. Her clinical and scientific work have focused on improving quality of life and function for children with different types of physical and neurological disabilities.

 

 

 

 

Presenters:


Donald Brown, ChFC, CASL, LUTCF

Don has been in the financial services industry for the past 31 years. Educating individuals and families on how to properly plan for a dependent with special needs is a primary focus of Don’s practice. Don demonstrates a broad, long-standing commitment to local community and philanthropic service. He is an over 20-year volunteer with Camp Fatima of New Jersey, an all-volunteer one on one camp for developmentally challenged children. Don is a graduate of Rutgers University with a degree in Economics and Finance and holds his series 6, 7, 63 and 24 security licenses along with his life, annuity, accident and health

 

 

 

Tricia Catalino, PT, DSc, PC
Tricia Catalino, PT, DSc, PCS is an associate professor of the School of Physical Therapy at Touro University Nevada. During her 20 years of practice, Dr. Catalino has served children with disabilities and their families in the early intervention (EI) setting. She is an ABPTS pediatric clinical specialist and the Chair of the APTA, Academy of Pediatric Physical Therapy, EI Special Interest Group. She is a Fellow-in-Training in the APTA Education Leadership Institute and is the Physical Therapy Coordinator for NvLEND – Nevada Leadership Education in Neurodevelopmental and Related Disabilities program. Dr. Catalino is a member of both the Division for Early Childhood (DEC) Recommended Practices Commission and the DEC Executive Board. She received her BS and MPT degrees from Northwestern University and her MS and DSc degrees from the University of Oklahoma Health Sciences Center.

 

 

Maureen Casey
Maureen Casey and her husband David, have three children, including one with AMC. Maureen serves the Arizona Department of Economic Security (DES) as the Bureau Chief for the Arizona Early Intervention Program (AzEIP), within the Division for Developmental Disabilities. Through a network of stakeholders and partners, the Division plays an important role to support families of infants and toddlers with disabilities to help their children grow and develop, and connects them to community resources. Maureen began her career with the Department of Economic Security in 2013, as a Continuous Quality Improvement Coordinator. Over the last three years she has been in a series of roles which have enabled her to use her passion for data and systems-thinking to support staff to more efficiently serve the families supported by the Department . A nationally recognized expert on children with disabilities, she presents often on how systems can use data to improve outcomes for children and their families. Maureen has a Bachelor’s of Arts from Marist College and a Master of Arts from Fordham University.

 

Christina Crowder, RDN
Christina is a Registered Dietitian/Nutritionist at the University of Oklahoma Physicians Diabetes and Endocrinology Clinic in Tulsa, Oklahoma, specializing in pediatric endocrinology. A majority of her practice is spent working with children who have complex health care needs requiring enteral feeding management. She also is engaged in the clinic Type 1 Diabetes research and has a passion for furthering evidence-based practice through research. Outside of the clinic, she volunteers with the University of Tulsa as a sports dietitian; consults with USA Gymnastics; and is very active within her church. She recently started a private consulting practice, Christina Crowder-RDN LLC.

 

 

 

Dr. Ann Marie Davison
Dr. Davison is a faculty member in the biology department at Kwantlen Polytechnic University near Vancouver, BC, Canada where she has been teaching genetics for over 20 years. She has been married to her husband Mark for 19 years. She enjoys traveling and crafting, especially card making.

 

 

 

 

Dr. Greg Dean, MD
Dr. Gregory Dean is a board certified urologist who specializes in pediatric urology. He is a graduate of Oberlin College, and he received his medical degree from Columbia University College of Physicians & Surgeons. Dr. Dean is an Associate Professor of Urology/Pediatrics at Temple University/ Temple Children’s Medical Center. He is affiliated with Shriners Hospital Philadelphia, Abington Memorial Hospital, and St. Christopher’s Hospital for Children. Dr. Dean serves on the Board of Directors of “Healing the Children – Greater Philadelphia ” a non-profit that provides access to medical care for children in need all around the world Dr. Dean has been in practice for more than 20 years

 

 

 

Dr. Maureen Donohoe, PT, DPT, PCS
Dr. Donohoe is a pediatric physical therapist and clinical specialist at Nemours/ Alfred I duPont Hospital for Children where she has specialized in pediatric orthopedics and participates in many of the hospital’s orthopedic specialty clinics. She has been the primary PT in the arthrogryposis program at the hospital since 1989 and the clubfoot program since 2009. Reenee has also spent the over 20 years working part time as a preschool and school based physical therapist. Most recently, through her personal contracting agency she has been supplying consultative PT services to adults with pediatric disorders. Dr. Donohoe has authored the chapters on arthrogryposis and osteogenesis imperfecta in tall five editions of the textbook Physical Therapy for Children, authored the Relapsed Clubfoot in Pediatric Clinical Case Studies, and the Sports and Recreation chapter in Children with Osteogenesis Imperfecta: Strategies to Enhance Performance. She is actively involved in research involving AMC and has been involved with multiple published research papers. She has had the opportunity to lecture nationally and internationally on AMC.

 

Caroline Elfassy, MSc. OT (C), erg.
Caroline is an occupational therapist and research assistant at Shriners Hospital for Children – Canada. As a clinician, she has been actively involved in treating children with AMC and their families. As a research assistant she is currently overseeing a project on rehabilitation practice of youth and young adults with arthrogryposis multiplex congenita. She has recently been accepted to McGill University to pursue her PhD in Rehabilitation Sciences with a focus on AMC.

 

 

 

Dr. Michelle A. James, MD
Chief of Orthopaedic Surgery, Shriners Hospital for Children Northern California I have cared for children with problems with hand function associated with hand malformations, post-traumatic deformities and neuromuscular conditions for 28 years. I focus on the child’s function and performance, especially from their own perspective. My research interest is children’s hand and arm function, particularly the ability of children with hand problems to perform daily activities and participate in activities of their choice. My greatest professional joy is learning from a child or their parent that my intervention has improved their ability to accomplish a task that is important to them.

 

 

 

Sherry Manning
Sherry Manning is currently the Executive Director of the Nevada Governor’ s Council on Developmental Disabilities (NGCDD) after four years as Program Manager and Housing Developmental Specialist for the NGCDD. Prior to accepting the position with the NGCDD, Ms. Manning was the Director of Consumer Credit Affiliates where she provided education and counseling to clients in need of affordable/accessible housing and budget/credit assistance. Ms. Manning’s educational background is in accounting with twelve years as a senior auditor for the State of Nevada Department of Taxation.

 

 

 

Dr. Scott Oishi, MD 
Dr. Scott Oishi is the Director of the Hand Service at Texas Scottish Rite Hospital for Children in Dallas, Texas. He is a Professor in the Department of Plastic Surgery and the Department of Orthopaedic Surgery at the University of Texas-Southwestern Medical School. He provides upper extremity care for many AMC patients and has given lectures on treatment strategies in these patients both Nationally and Internationally.

 

 

 

 

Filiberto Ontiveros 

Filiberto is the father of AMCer Junhyo. An advocate in the disabilities community. He was the Recipient of the 2015 Nevada Family Advocate Award. Past member of the Nevada Governor’s Council on Developmental Disabilities and graduate of “Partners In Policy”. He recently began a small business “Ontiveros Affordable Adaptations” making adapted switch toys.

 

 

 

Robert Page
Robert Page is Firefighter Paramedic in Tulsa, Ok and the father of a 4 year old AMCer named Brian. Robert has a Bachelor’s Degree in Fire and Emergency Services from Northeastern State University and Paramedic from the Cherokee Nation. This will be the second time for Robert to speak at an AMC Conference

 

 

 

 

Dr. Karl Rathjen, MD
Dr. Karl Rathjen is assistant chief of staff at Texas Scottish Rite Hospital for Children. He is also a Professor of Orthopaedic Surgery at The University of Texas Southwestern Medical Center and is Director, Division of Pediatric Orthopaedics, Children’s Medical Center Dallas. Dr. Rathjen is an honor graduate of the University of Texas at Austin and received his medical degree from the University of Texas Southwestern Medical Center. He completed his orthopaedic surgery residency at Parkland Hospital / The University of Texas Southwestern Medical Center and a fellowship in pediatric orthopaedic surgery at Children’s Hospital in San Diego. Dr. Rathjen is a member of the Pediatric Orthopaedic Society of North America, the Scoliosis Research Society, the American Academy of Cerebral Palsy and Developmental Medicine, the American Academy of Orthopaedic Surgeons, and the American Medical Association.

 

 

Rachel Schickowski
Growing up in the Midwest with AMC makes life interesting. Rachel is proud to say she has mastered crutches and snow (well, most of the time). She graduated with a degree in Journalism and Mass Communication and when she’s not working, Rachel can be found with her two favorite boys, Shane (hubby) and Oliver (son).

 

 

 

 

Beth Sellers, MAED
Beth Sellers is a parent of a 10 year old with Arthrogryposis, who also happens to be blind. She also has another daughter with multiple disabilities including cerebral palsy and blindness, and two other kids without disabilities. Beth has spent her career working with students who have unique abilities both as a special education teacher and as an assistive technology specialist.

 

 

 

 

Dr. Kit Song, MD 
Dr. Song is Professor of orthopedic surgery at UCLA Geffen School of Medicine and Medical Director of Surgical Services for the UCLA faculty practice group. He trained at the University of Washington and the Texas Scottish Rite Hospital for Children in Dallas, staying on staff in Dallas for 3 years before returning to Seattle Children’s Hospital where he spent nearly 20 years managing complex pediatric musculoskeletal and spine problems. He served as the orthopedic consultant to the Seattle Children’s arthrogryposis clinic and director of the complex spine and early onset scoliosis program. He has been active in the Pediatric Orthopedic Society of North America, the Scoliosis Research Society, and the American Academy of Orthopedic surgery in the areas of quality, safety, and value in health care. He has a Masters in Health care administration from the University of Washington and in his current role works within UCLA health to develop strategies for the rational delivery of surgical specialty health care by UCLA to Southern California populations.

 

Jessi Spring 
Master Gardener working with the Greater Greenville Master Gardener Association. She also runs Southern Roots Farm, a hobby farm in South Carolina. As a mom to a 7-year old AMCer, accessibility is a constant focus.

 

 

 

 

 

Brian C. Stone
Brian is an adult AMCer who is 51 years old. His arthrogryposis impacts all major joints. He’s had 16 surgeries and 6 broken bones. Brian is a Certified Fitness Trainer and the founder of First Step Fitness. He holds a 1st Degree Black Belt in Non Classical Gu Fu and was inducted into the Masters Black Belt “Hall Of Fame” in 2009. He has owned and operated three personal training studio’s in the past 17 years. Prior to being a personal trainer, he was an Accountant for 10 years.

 

 

 

Dr. Harold van Bosse, MD
Dr. van Bosse is on staff at the Shriners Hospital for Children in Philadelphia, where he has had the opportunity to develop a specialty practice in the treatment of children with arthrogryposis. In addition, he enjoys treating the entire realm of pediatric orthopaedic surgical conditions, with special interests in limb deformity, neuromuscular disease, and pediatric spine deformities.

 

 

 

 

 

Please note that the schedule is subject to change.

If you have any questions regarding the 12th Annual AMCSI Conference, please don’t hesitate to contact AMCSI at amcvegas17@gmail.com.

Keynote Speaker Dr. Noémi Dahan-Oliel The New Face of Research for AMC

Dr. Harold van Bosse: AMC 101

coming soon

Jessi Spring: Adaptive Gardening

Tricia Catalino: Early Intervention Best Practice

Brian Stone: Fitness Trainer

Dr. Karl Rathjen: Spine & Lower Extremities in AMC

Michelle A. James, MD
The Child with AMC: A Pediatric Hand Surgeon’s Approach

AMCSI Conference Planning Committee

 

Michele Schaffer | Program Director

Michele Schaffer and her husband Allen have four children, David, Andrew-AMC, Christopher, and Kaytlin. Michele currently works for the New Albany Plain Local School District in the Special Education Department. Michele joined the Board of Directors of Arthrogryposis Multiplex Congenita Support, Inc., in 2006 and served as a Co-Chair for the 2008 Ohio Conference. She accepted the position Vice-President of Programming in 2010. In her free time, Michele enjoys attending her children’s activities, volunteering, reading and singing with The Voices of Ohio, a professional vocal ensemble. Michele and her family currently reside in Columbus, Ohio.

 

  Betsy Gates-Ehlers | Conference Program Assistant

Betsy Gates-Ehlers is mom to Jake (AMC – Amyoplasia, 7 yrs old) and Karl (4 months old) and wife to Andrea. Betsy is a Data Manager at the University of Illinois at Chicago. In her free time, Betsy plays on the Chicago Frozen Snappers, a recreational women’s ice hockey team and loves to spend summer weekends camping with her family! The Gates-Ehlers live Northwest of Chicago in the town Betsy grew up in.

 

Ani Samargian | Conference Program Assistant

Ani Samargian is the proud mom of Abby, who was born with arthrogryposis, Aiden, and Isabella and Ciaran Allen. Ani serves on the Board of Directors of AMCSI, South Carolina Disabilities and Special Needs Board, and she is a Support Parent for Family Connection of South Carolina. Learning about Abby’s AMC and supporting families going through similar situations was the inspiration and drive behind amcsupport.org. Ani and her family live in Spartanburg, South Carolina.

 

Ileana Hernandez

Ileana Hernandez is from Los Angeles, CA. She was born with arthrogryposis and has been involved with Arthrogryposis Multiplex Congenita Support, Inc. since 2010. Aside from keeping amcsupport.org and our social media sites up-to-date, Ileana works as a freelance graphic designer while attending school to become an art therapist and volunteers at Children’s Hospital Los Angeles.

 

  LaShell Page

LaShell Page is a seasoned 1st grade teacher in Oklahoma and mother of a 4 year old AMCer named Brian. LaShell is married to Robert Page and is also the mother of 2 year old little boy Cohen. LaShell graduated from Northeastern State University with a Bachelor Degree in Education. This will be LaShell’s second year as the Children’s Programming Director for the Conference. Making the Conference fun and entertaining for the kiddos is her number 1 priority. LaShell is driven by her love and passion for teaching children in her career, life, and in the conference.

 

Jean M. Balent-Gephardt

Jean, wife to Matt and mother to William (AMC) currently lives in Maryland. She is an environmental engineer, working for the US Environmental Protection Agency. After William’s birth, the Gephardts were overjoyed to find and join the AMCSI community. They have been regular attendees at the conference since 2012. Jean also enjoys yoga and volunteering with local environmental cleanup groups in the Baltimore area.

 

Privacy Policy

Your privacy is important to Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI).

Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) attaches great importance to protecting personal data and maintaining privacy. This policy describes the types of personal information we may collect from you, the purposes for which we use the information, the circumstances in which we may share the information and steps that we take to safeguard the information to protect your privacy.

The personal data we collect and why

When entering your data into the online registration site (Eventbrite: privacy policy), we collect this data from you for the purpose of registering you for the conference. Of course, you are not required to supply any of the information that we may request. However, failure to do so may result in our being unable to register you for the conference.

Use and disclosure of your personal data

By submitting this registration form you consent to the processing of the entered information by Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) and online registration site (Eventbrite) as described in this privacy statement.

Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) will use the personal information to process your registration, communicate with you, and obtain your feedback in regards to the conference. In doing so, your information may be transferred throughout Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) and shared with third parties who will be providing online registration support and accommodations.

Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) will not sell or disclose your personal data to other third parties without your consent.

Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) does not share your personally identifiable information with other organizations for their marketing or promotional uses without your prior express consent.

Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) may only use the data to provide you with further information from Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) if you opt-in this service by ticking the relevant box.

Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) may disclose your personally identifiable information if required to do so by law or in the good-faith belief that such action is necessary to comply with state and federal laws or respond to a court order, judicial or other government subpoena, or warrant in the manner required by the requesting entity.

International Attendees

Attendees attending the annual Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) Conference from the European Economic Area or other Non-United States Territories, please note that any data you enter into the online registration site (Eventbrite) will be transferred outside the European Economic Area or other Non-United States Territory for use by Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) and its affiliates for the purposes described in this policy. You hereby expressly consent to such transfers of your data to the United States and other countries.

Controlling your personal data

You are entitled to access any personal data about you held by Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) by sending a written request to the email or address below. You may be required to supply a valid means of identification as a security precaution to assist us in preventing the unauthorized disclosure of your personal information. We will process your request within the time provided by applicable law.

You are also entitled to have Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) modify or delete any information that you believe is incorrect or out of date. Please contact the individual identified below.

If you decide that Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) may provide you with further information from Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) by ticking the relevant opt-in box in the online registration form and you do not wish to get such information any longer please contact the Board of Directors at BOD@AMCSUPPORT.ORG

Or

Arthrogryposis Multiplex Congenita Support, Inc.
P.O. Box 6291
Spartanburg, SC 29304

Additional information

For general information on data protection in regards to our website and Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) in general, please visit www.amcsupport.org. If your relationship with Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) ends, we will continue to treat your personal data, to the extent we retain it, as described in this privacy statement.

If you have any questions regarding the 12th Annual AMCSI Conference, please don’t hesitate to contact AMCSI at amcvegas17@gmail.com.

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