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

With a condition so rare that only one in 3000 babies born have this neuromuscular disorder it’s easy to comprehend how alienated anyone with arthrogryposis multiplex congenita (AMC) must feel. Through the hard work of one mother’s vision and an army of members, the AMC support group has helped bridge the gap with the power of the internet. It is not only the group’s mission to provide and encourage a greater understanding and awareness of this condition, but also to provide a support system. To help those that have felt all their lives an outcast or alone, meet others who have lived that same life, to meet other families who have the same concerns and to provide a resource of information.

But meeting on-line is not enough. It’s hard to explain to a mom exactly how another mom has taught her child to sit up without the use of his arms, or how one child learned to stand. What so many people take for granted: the ease of walking, typing, eating and breathing those with AMC have had to struggle to adapt to this world. Our conferences solidify that bridge and strengthen the bond of our AMC family. Once a year we come together, bring professionals, doctors, physical therapists, occupational therapists, provide workshops and invite people throughout the world to learn, share, laugh, cry and grow.

AMCSI 12th Annual Conference Information

12th Annual AMCSI Conference:
June 28 – July 1, 2017
Las Vegas, Nevada, United States of America

Who is Arthrogryposis Multiplex Congenita Support, Inc? (AMCSI)
AMCSI is a nonprofit organization created to provide information and support to those affected by arthrogryposis multiplex congenita. AMCSI welcomes not only families, but also those in the medical community.

What is the Annual AMCSI Conference?
The Annual AMCSI Conference provides an opportunity for people affected by arthrogryposis multiplex congenita to gather and exchange ideas and support. During the three-day event, families and medical professionals learn from experts regarding “best practice” in the treatment of arthrogryposis multiplex congenita.

Where is the 2017 Annual Conference?
Las Vegas, Nevada

When:
June 28 – July 1, 2017

Online Registration is now closed.  However, we will accept Walk Up Registrations at the conference.  Registration will open at 4:00 PM on Wednesday, June 28, 2017 in the Grand Foyer in the conference center at the JW Marriott Las Vegas Resort and Spa.

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

Registration

Fees (per person)

Ticket price includes: registration for event, t-shirt and dinner on June 29th.

 Online Registration is now closed.  However, we will accept Walk Up Registrations at the conference.  Registration will open at 4:00 PM on Wednesday, June 28, 2017 in the Grand Foyer in the conference center at the JW Marriott Las Vegas Resort and Spa.

Walk Up Member Registration Fees

Walk Up – Member Adult (18 & up) with AMC – PSGF                     $0.00
Walk Up – Member Adult (18 & up)                                                   $75.00
Walk Up – Member Child with AMC – PSGF                                      $0.00
Walk Up – Member Child with AMC (under 1 year old) – PSGF         $0.00
Walk Up – Member Child                                                                    $60.00
Walk Up – Member Child (under 1 year old)                                       $7.00

Walk Up Non-Member Registration Fees   
Walk Up – Non-Member Adult (18 & up) with AMC – PSGF                 $0.00
Walk Up – Non-Member Adult (18 & up)                                              $85.00
Walk Up – Non-Member Child with AMC – PSGF                                 $0.00
Walk Up – Non-Member Child with AMC (under 1 year old) – PSGF    $0.00
Walk Up – Non-Member Child                                                              $70.00
Walk Up – Non-Member Child (under 1 year old)                                 $7.00

 

 

Before you register for conference, please be sure to Become a Member first to get the Member pricing!

REGISTER NOW!
 

Note: If you register for conference, PLEASE book your room through the website link in your registration confirmation email! If you call the hotel booking line, they will NOT honor the conference pricing! One of our members discovered this and there is a HUGE difference in room price!

 


**AMCer Registration is being funded by Project Scissor Gait Foundation!

Hotel Information

J.W. Marriott Las Vegas Resort & Spa

221 N. Rampart Blvd
Las Vegas, NV 89144

Reserve room with AMCSI discount $109 + tax a night

When booking room online, please add a note to hotel that you need an accessible room.

You MUST register with AMCSI before making reservations at the Marriott.

Hotel Update as of 6/1/17 8:30AM Eastern
The Official Conference Hotel: JW Marriott Las Vegas, 221 N Rampart Blvd, Las Vegas, NV 89145 Phone: (702) 869-7777 has a VERY LIMITED number of rooms available.

If you not yet booked a room, you can split your stay between the JW Marriot and another location or stay the entire time at one of the following overflow Hotels:

Suncoast Hotel and Casino (approximate 1/2 mi from JW Marriott)
Address: 9090 Alta Dr, Las Vegas, NV 89144
Phone: (702) 636-7111

Red Rock Casino, Resort & Spa (approx 4 mi from JW Marriott)
Address: 11011 W Charleston Blvd, Las Vegas, NV 89135
Phone: (702) 797-7777

Courtyard Las Vegas Summerlin (approx 4 mi from JW Marriott)
Address: 1901 N Rainbow Blvd, Las Vegas, NV 89108
Phone: (702) 646-4400

To see the hotels on a map, please visit https://www.google.com/maps/d/edit?usp=sharing&mid=1uGzOMEoat9yDB1FqNOX4IEKt3ns

Note: If you register for conference, PLEASE book your room through the website link! If you call the hotel booking line, they will NOT honor the conference pricing! One of our members discovered this and there is a HUGE difference in room price!

Parking

Complimentary on-site parking
Complimentary valet parking

Transportation

J.W. Marriott Las Vegas Resort & Spa does not provide shuttle service.

Alternate transportation:

Estimated taxi fare: $60.00 USD (one way)

Dining and Entertainment

The hotel offers many dining options. Click here for details.

If you have any questions regarding the 12th Annual AMCSI Conference 2017, please don’t hesitate to contact AMCSI at amcvegas17@gmail.com.

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.

 

Fees

Why is AMCSI Charging a registration fee?
Due to the phenomenal growth of our organization, and the continually rising costs of hosting the conference, the Board of Directors of AMCSI has deemed it necessary to charge a registration fee per person to attend our annual conference. This year’s registration fee includes your conference registration, conference T-Shirt, and the annual dinner for each registered attendee. We have opted for an “All Inclusive Registration” to streamline the registration process for both attendees and our volunteers.
AMCSI MEMBERS GENERAL REGISTRATION RATES: (Through June 27, 2017)
Adult (18 yrs or older): $65
Child (over 1 year to 17 years): $45
Child (under 1 year): $7
Adult (18 yrs or older)with AMC: FREE – Thank you Project Scissor Gait Foundation!
Child (under 18 years) with AMC: FREE – Thank you Project Scissor Gait Foundation!

NON MEMBERS of AMCSI GENERAL REGISTRATION RATES: (Through June 27, 2017)
(If you become a paid member of AMCSI prior to Early-Bird Registration, you pay Member Registration rates! https://www.amcsupport.org/becomeamember.html)
Adults (18 yrs or older): $80
Children (over 1 year to 17 years): $55
Child (under 1 year): $7
Adult (18 yrs or older) with AMC: FREE – Thank you Project Scissor Gait Foundation!
Child (under 18 years( with AMC: FREE – Thank you Project Scissor Gait Foundation!
For more information about the Project Scissor Gait Foundation, please visit http://www.projectscissorgait.org

Who has to register?
Anyone who will be attending or participating in ANY AMCSI functions, including but not limited to sessions, talent show, or dinner, must be registered for the conference. This includes, but is not limited to, friends, personal care assistants, nurses, extended family, etc. This is for the safety and security of our attendees. Children (anyone under the age of 18) MUST be registered with an adult.

If I am an Individual Member, can I bring additional family members/friends at member rates?
Since you do not have a family membership, any additional registrations would be at the non-member prices. Consider joining with a family membership!

Example: I am an adult with AMC and will be bringing my caregiver who is not an AMCSI member.
Register 1 AMC Adult ($0.00) and 1 Adult Non-Member ($85) = Total $85

We have a family membership, can we register our children as members?
If you have a family membership, your membership includes two adults and any minor children in the family. Therefore, your children can be registered at member rates.

Example: I am bringing my spouse and two children (one with AMC). We have a family membership of AMCSI.
Register 1 AMC kids ($0.00) and 2 Adult Member ($65 each) and 1 Kid Member ($45) = Total $175

I am an individual AMCSI member, but my son is not. If just the two of us are coming, is the registration $35.00 for him?
Its $45 for him since you are an Individual AMCSI member. (Unless he is an AMCer, then its free thanks to Project Scissor Gait Foundation).

We have a family membership but what about our kids, technically they are not members, do we pay $45 for each child?
Yes, you must pay $45 per child unless they have AMC. If they have AMC, then they are free thanks to Project Scissor Gait Foundation.

My child holds a lifetime membership, but I am not a member. Can I register under my child’s membership?
If your child holds the membership in their name, only your child can register as a member. You and your second child would need to register at NON Member rates. (Consider a Family Membership! https://www.amcsupport.org/becomeamember.html)

Example: I am bringing my child with AMC and my other child without AMC. We have a child membership with AMCSI only for our child with AMC.
Register 1 AMC kids ($0.00) and 1 Adult Non-Member ($75 each) and 1 Kid Non-Member ($45) = Total $125

We have a family membership, but our child is over the age of 18. Can they register under our family membership?
No. If your child is 18 or over, they are no longer considered a Minor Child. They would need to hold their own membership to AMCSI in order to register as a member.

What is your refund policy?
All refund requests will be processed AFTER conference has ended. Requests made via social media WILL NOT be honored. All refund requests must be made in writing and sent to bod@amcsupport.org. The date stamp on the email will determine the amount of refund according to the following schedule:

60+ days prior to June 28, 2017: Full Refund minus a $15 administrative fee*
59-30 days prior to June 28, 2017- 50% refund
29 days or less prior to June 28, 2017: No Refunds

*Cancellations for those with AMC will incur a nominal processing fee to cover the fees associated with Eventbrite and paypal.

Hotel

At what hotel is the conference?
J.W. Marriott Las Vegas Resort & Spa

How much does the hotel room cost, and how do I get the group rate?
$109 + tax a night. Register for conference and after submitting you will receive a confirmation email with the link to book your room at the discounted rate.

How do I book my room with the group rate?
After you register for the conference, you will receive a confirmation email. In that email will be a link to reserve your hotel room. All you have to do is put you are an attendee, and the dates you wish to reserve. It automatically gives AMCSI’s room rate.

What is the “resort fee”?
The hotel as part of their standard reservation process has added a “resort fee” (approximately $19/night) to reservations for additional discounts and services. AMCSI attendees do NOT have to pay the resort fee; it is optional. To remove the fee, attendees should decline the charge at check in. The front desk associate will see that the resort fee is optional for the group and ask them if they would like to purchase it. If they chose not to purchase the resort fee, the front desk associate will deactivate the resort fee and the attendees will not be charged the resort fee. There is nothing the attendees need to do ahead of time.

Can I use a debit card to reserve my hotel room?
Yes, you may use a debit card to reserve you room. However, debit cards will receive a $25 per day “hold” on funds which will be refunded 5-10 days after checkout by the hotel.

Can I cancel my Hotel Reservation?
Every hotel has different policies regarding room cancellations. Please contact the hotel directly.

Can my reservation include days before or after the dates of the conference?
The three days prior to the start conference (June 2017 ) and the three days after conference ends (July 2017) are called “Shoulder Dates.” Based on hotel availability, rooms may be booked at our discounted rates on these dates.

Is there a coin laundry on property?
No but there coin laundry facilities located near the hotel. Please contact the hotel directly for additional details.

Is there a casino on property?
Yes, there is a casino on the resort property. More information is available online.

Are there refridgerators in the guest rooms?
Yes, each room is equipped with a mini fridge. Please contact the hotel directly for additional details.

Conference

Where will the sessions be held?
At J.W. Marriott Las Vegas Resort & Spa.

Is the conference a good place to bring siblings or should they stay home?
The WHOLE family is WELCOME to attend! We try to have sessions for everyone.

Why is there no Childcare provided this year?
With the attendance numbers going up each year, it is hard to find enough volunteers to help with childcare, as well as having a big enough space for this. We WILL provide a room for feeding, changing diapers, play, etc., but a parent or guardian MUST stay with the child/children.
We know childcare would be helpful, and we’ve tried to provide it at earlier conferences. There are a few issues the first is legal liability for AMCSI. If we provide childcare we must conform to state childcare regulations. We’ve tried to do this with volunteers, and were never able to provide the proper adult to child ratio. We also have looked into Professional services that provide children’s activities at conferences etc. Those services would cost over $30,000, more than our entire budget for the conference! To pass that cost on to the families in attendance would make the fees between $250-$300 per child per day, IF we have enough people willing to pay. (This is an average from four different providers.) We can, however, ask the hotel if they recommend a sitting service/nanny agency and individuals can contact them on their own/at their own risk. Another option would be to bring a friend/family member to serve as a “Mother’s Helper” during the event.

Since you don’t provide childcare, can my child attend the sessions with me?
Your child may attend the sessions with you; however, please know that some of the medical sessions may include photographs of medical procedures that a child may find disturbing. We also ask, that if your child needs your attention, you respect the speaker and attendees and care for them outside of the session room.

Is it ok for my family to stay at a different hotel?
AMCSI recommends that, if at all possible, you stay at the J.W. Marriott Las Vegas Resort & Spa for several reasons. We have a contract with the hotel to fill a block of rooms at a discounted price in return for a lower hall rental fee. If AMCSI does NOT fill the contracted block during conference, we are charged a large fee. We have also heard from our families that have stayed at other area hotels in the past, that they felt they missed out on “family time.”

Will we get a list of those attending with their contact information?
AMCSI will not publish our list of attendees for privacy reasons but we do include a blank page in our program for you to write down contact info from families you chose to exchange that with as well as have an “I attended” thread on our forums after the conference for those who choose to participate.

When will AMCSI announce the location of the 13th annual conference?
AMCSI will not announce the location for the 13th annual AMC Conference until closing ceremonies of the 12th annual AMC Conference in Vegas. This is, and will continue to be, an AMCSI tradition. Our conference crew is an all volunteer unpaid group that is working VERY hard on making 2017 a success. If we announced 2018 before the end of 2017, they would be bombarded with questions.

Why can’t I attend the sessions noted as “Moms, Dads, Grandparents, Siblings, Teens/Adults/Men/Women with arthrogryposis” with my spouse/teen/sibling?
To respect the privacy of individuals in these highly personal sessions, AMCSI tries to maintain an atmosphere of confidentiality and promote peer to peer connections during these sessions.

I am not comfortable allowing my tween/teen with arthrogryposis to attend the session without me. How can you reassure me that discussions are age appropriate?
We have adults with arthrogryposis serving as moderators in this session, this is to assure that topics discussed are age appropriate.

Transportation

Does the airport/hotel have a shuttle?
This hotel does not provide shuttle service.

Alternate transportation:
Personal Sedan Service, Phone: 702-248-7706 FREE 702-248-7706
Fee: $69 USD (one way) reservation required
Estimated taxi fare: $60.00 USD (one way)

Accessible transportation:
Desert Cab Inc.: 702.386.9102
Lucky Cab: 702.477.7555
Whittlesea Blue Cab: 702.384.6111
Yellow Checker Star Taxi Cab: 702.873.2000

Food

Are there places to eat that we can walk to, or do we need a car?
There are 10 restaurants inside the hotel and in-room dining available. Click here for details. There is a P.F Changs, Cheesecake Factory, Roy’s Summerlin (Aisian-Fusion), and Mimi’s Café (American) all within a mile of the hotel.

Shopping

Are there places to shop?
YES, at the AMCSI Store!!
The hotel provides a shuttle to and from the Fashion Show Mall. (Resort Fee applies)
Also…

Grocery Stores:
0.7 miles SE
fresh52
302 S Rampart Blvd, Las Vegas, NV

0.9 miles N
Las Vegas Farmers Market
1600 N Rampart Blvd, Las Vegas, NV

1.2 miles S
Whole Foods Market
8855 W Charleston Blvd, Las Vegas, NV

3.5 miles E
Walmart Neighborhood Market
6310 W Charleston Blvd, Las Vegas, NV

3.8 miles NE
Walmart
3041 N Rainbow Blvd, Las Vegas, NV

1.9 miles E
Trader Joe’s
7575 W Washington, Las Vegas, NV

Shopping Malls:

0.7 miles SE
Tivoli Village
440 S Rampart Blvd, Las Vegas, NV

1.0 miles S
Rampart Commons
1055 S Rampart Blvd, Las Vegas, NV

1.5 miles NW
Trails Village Center
1970 Village Center Cir, Las Vegas, NV

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

General Schedule

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

Please note that the schedule is subject to change.

Wednesday June, 28, 2017
4 PM to 7 PM Registration
7:15 PM to 10 PM Welcome Social

Thursday June 29, 2017
9 AM to 9:45 AM Registration
10 AM to 10:45 A with KeyNote Speaker Dr. Noémi Dahan-Oliel M Opening Ceremony
11 AM to 11:45 AM First Time Attendee Welcome
12 PM to 2 PM Lunch
12 PM to 3:45 PM Registration
2 PM to 2:45 PM Reenee Donohoe: Adult Foot Frustrations
2 PM to 2:45 PM Maureen Casey: Understanding your educational rights
2 PM to 2:45 PM Dr. Harold van Bosse: AMC 101 Pt 1
2 PM to 2:45 PM Teens and Tweens with AMC
2 PM to 2:45 PM Families through Adoption
2 PM to 5 PM Children’s Programming
3 PM to 3:45 PM Don Brown: Special Needs Trust
3 PM to 3:45 PM Robert Page: DIY with PVC
3 PM to 3:45 PM Dr. Harold van Bosse: AMC 101 Pt 2
3 PM to 3:45 PM Moms of AMCers: 10 and Under
3 PM to 4:45 PM Adults with AMC
4 PM to 4:45 PM Filiberto Ontiveros: Advocating From Within the System PM Moms of AMCers: 10 and Under
4 PM to 4:45 PM Tricia Catalino, PT, DSc, PTS Early Intervention Best Practice
4 PM to 4:45 PM Moms of AMCers: 11 and Up
6 PM to 8 PM Group Dinner

Friday June 30, 2017
9 AM to 9:45 AM Reenee Donohoe Recent Changes in Healthcare Reimbursement
9 AM to 9:45 AM Filiberto Ontiveros: DAD as a Problem Solver
9 AM to 9:45 AM Dr. Michelle James: Upper Extremities Amyoplasia
9 AM to 10:45 AM Adult Men with AMC 18 and up
9 AM to 10:45 AM Adult Women with AMC
9 AM to 11:45 AM Children’s Programming
10 AM to 10:45 AM Caroline Elfassy SPARC Rehab
10 AM to 10:45 AM Jessi Spring: Adaptive Gardening
10 AM to 10:45 AM Dr. Kit Song: Treatment of Amyoplasia in lower extremities
11 AM to 11:45 AM Beth Sellers: Adaptive Technology
11 AM to 11:45 AM Brian Stone: Fitness Trainer
11 AM to 11:45 AM Dr. Gregory Dean: Urology
11 AM to 11:45 AM Teen/Tween Boys with AMC 10-17
11 AM to 11:45 AM Teen/Tween Girls with AMC 10-17
12 PM to 2 PM Lunch
2 PM to 2:45 PM Dr. Scott Oishi: Upper extremities
2 PM to 2:45 PM Grandparents
2 PM to 3:15 PM Caroline Elfassy & Noémi Dahan-Oliel Clinical Research: 90 minute session
2 PM 3:45 PM Dads of AMCers
2 PM to 5 PM Children’s Programming
3 PM to 3:45 PM Sherry L. Manning NV. Gov. Council on DD
3 PM to 3:45 PM Dr. Karl Rathjen: Spine
3 PM to 3:45 PM Sib Shop Ages 9-17
3:15 PM to 3:30 PM Ann Marie Davison – Adult Outcomes Update
4 PM to 4:45 PM Christina Crowder: blenderized diets, nutrition and AMC
4 PM to 4:45 PM Rachel Schickowski: My Legs are NOT Broken
4 PM to 4:45 PM Partners of Adults with AMC
4 PM to 4:45 PM Young Adults with AMC 18-30
7:15 PM to 10 PM Talent Show and AMC Dance Party

Saturday July 1, 2017
9 AM to 9:45 AM Group Photo
10 AM to 11:45 AM Painting with Theresa, Face Painting with Chris, Scarman Dolls
2:00 PM to 2:45 PM Closing Ceremony, Announcement of 2018 Location

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.

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.

Reach for the Stars – Ads and Notes

‘Reach for the Stars’ Notes are great ways to tell the AMC’er special to you that you care and support them in everything they do. These notes may be directed towards an AMC’er or an AMC family.

If you would like to reserve a note and/or ad space in our conference program please choose from the options below (Text-Only Note or Business Ad). Our program will be printed in full color (how your note and/or ad is printed will be determined by how it is submitted) based on 8.5″x11″ pages.

‘Reach for the Stars’ notes examples:
“To our Favorite AMC’er, We are so glad to have you in our lives. Love, Mom and Dad.”
“Reach for the stars, Herbert! All our love, Grammy and Grampy”

Price: $15

To order online: Complete the online order form

Deadline has been extended to June 3rd.

 

Business Ads

Interested in advertsing your organization or service to the AMCSI community? Consider one of the multiple advertising options in the conference program. Read more about Advertising Opportunities here.

Back Cover: $500
Inside Front Cover $300 Inside Back Cover: $250
Full page: $200
Half page: $115
Quarter page: $65
Business card: $40
Patron (Name ONLY): $25

Please note: AMCSI Board of directors have the right to refuse notes or ads that are not deemed fit or deemed unfit under AMCSI guidelines.
To order online: First complete the online order form
Then please email your artwork/text to: AMCVegas17@gmail.com

To order by mail: AMCSI, P.O. Box 6291, Spartanburg, SC 29304
Please submit all artwork, the attached order form, and a check written for the correct amount to the above address.

 

Sponsors and Exhibitors

Looking for ways to showcase your tools, services or group to the AMCSI attendees? Join us as a conference exhibitor! Read more about Exhibitor and Sponsorship Opportunities


AMCers can qualify for a special discounted exhibitor spot! Contact the Conference Planning Committee to learn more about exhibitor opportunities for AMC attendees by emailing 
AMCVegas17@gmail.com.

Please note: AMCSI Board of directors have the right to refuse sponsors or exhibitors that are not deemed fit or deemed unfit under AMCSI guidelines.

To order online: First complete the online order form
Then please email your artwork/text to: AMCVegas17@gmail.com

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

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.

Silent Auction

The AMCSI Silent Auction will run throughout the Annual Conference. If you would like to donate an item to include with the Auction, please fill out this online form. Previous items auctioned off have included: adaptive toys and gear, books, quilts, artwork, gift certificates, electronics, toys, toiletries, bags/purses and much more! Please note all items MUST be present at the AMCSI Annual Conference to be included.

Get Involved

Here are some of the many ways you can get involved with this year’s conference!

Tell Others About the Conference
Help us spread the word about the upcoming conference. Please tell your friends, families, doctors, therapists and other support organizations about the upcoming conference.

Join us at the 12th Annual AMCSI Conference! http://amcsupport.org/vegas2017_about.html

Registration is still open for the 12th Annual AMCSI Conference!!http://amcsupport.org/vegas2017_about.html

Submit a Photo or Video for Opening Slideshow
This year’s opening slideshow will showcase the theme of “This is how I … ” AMCers young and old can send ONE (1) photo or video clip showing us your AMCer’s amazing abilities! Please NO Captions or collage type photos.To assure your photos are not blurry on the big screen, the higher the resolution of the photo the better! Our request is that the image be 1920×1080 but at the least 1280×720. Video clips MUST be 5 seconds or shorter in length and convey the idea without sound (opening slideshow will not support sound from video clips). You do not have to attend Conference to have your photo/video included! Send your photo or video to amcvegas17@gmail.com. Submission Deadline: June 9, 2017 No exceptions!

Donate items to silent auction
The AMCSI Silent Auction is returning for its third year and will run throughout the annual conference in Las Vegas. If you would like to donate an item (previous auctions have included hand-crafted jewelry, artwork, gift cards, AMC-related adaptive tools, electronics etc) to include with the Auction, please fill out this online form. Please note all items MUST be present at the AMCSI Annual Conference to be included.

Buy supplies for Children’s Programming
Help support the amazing Children’s Programming planned for this year’s conference by buying supplies for the some of the activities. View our wish list on Amazon.

Volunteer during the conference
The conference could use a few helpful volunteers! Sign up to help out during one (or more if you like!) of these short shifts helping to man the AMCSI Store, Silent Auction tables, set up for Painting with Theresa, and other fun activities. Volunteer for 4 or more hours and earn a volunteer Tshirt. Sign up for a volunteer spot today!

 

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

Talent Show
Talent Show Information

The AMCSI Talent Show will be held on Friday June 30th, 2017 6:45-8:30pm. Registration for the talent show will available online in advance and at the conference.

Talent Show Guidelines:

Each act must include at least one AMCer.

All ages are invited to participate.

Acts are to be 2.5 minutes or less (due to event time constraints).

Examples of talent show acts are singing, playing an instrument, dance routines, magic acts, short comedy routines/skits, martial arts, gymnastics, etc. Talent show acts must be family friendly in nature and presentation.

Please keep singing performances in a karaoke or a capella (voice with no accompanying music) format. We would prefer to hear your or your AMCers own talented voice during the performance!

Each person may only perform in one, single act.

AMCSI asks that at least one parent assists for each childs performance prior to, while on stage and during exiting of the stage.

Talent Show Technology Guidelines

AMCSI will provide a computer during the talent show. Performers, please bring an accessible format for your musical accompaniment (i.e. Jump drive, IPod, CD, etc.). If you have any questions regarding the accessibility of your format, please email AMCVegas17@gmail.com.

Please provide a karaoke version/track of your song (easily found on I-Tunes or Amazon) to the Talent Show.

Please provide all music accompaniment for your acts prior to the beginning of the Talent Show. Talent Show acts must provide this music to AMCSI by 5 pm, Friday, June 30th. AMCSI will provide acts with a numbered performance list at this time.

Please bring any props, costumes, instruments, or materials with you to conference.

All acts will be assigned a number. Please be at the stage and ready for your performance within 2 acts prior to your own act (i.e. If you are act # 5, please approach the staging area when act #3 is on stage). This will help us ensure that the talent show runs efficiently.

Due to time constraints, the talent show will consist of 20 acts. Interested individuals must sign up at registration upon arrival. Once the slots are filled, AMCSI will close Talent Show registration. We apologize for any disappointment caused within these guidelines. The Talent Show will be followed by the AMCSI Dance. The AMCSI Dance is an informal event, in which we will have the stage open and provide music to be played from 8:30-10:30pm. Individuals are encouraged to share their physical accomplishments, impromptu dance routines, etc. during this fun, family friendly event!

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

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

Hope to see you at the conference!

Translate »