2016 Conference Brochure

Lakewood, CA 90714-0268
PO Box 268
A syndrome that doesn’t define me
Costa Mesa, California
July 28-31, 2016
Lights, Camera, Action
#takethatcriduchat
A syndrome that doesn’t define me
The theme of the 2016 annual conference and get together for
the 5p– Society is used as a battle-cry for many individuals with
Cri du Chat Syndrome and their families. Many parents were
told that their child would not accomplish much in the way of cog-
Soundstage: Hilton Orange County/Costa Mesa, 3050 Bristol St, Costa
Mesa, California 92626.
Reserve your spot at the location by calling (800) 445-8667, cut-off for reservations is June 27, 2016 to guarantee the group rate of $139.00 per
night. Please make sure you tell the hotel you are making a reservation for the
5p- Society Conference. There will be a limited number of suites available at
$189.00 per night. If you are driving or renting a vehicle there will be a $12.00
a night parking fee. Please make sure you let the hotel know if you need a
crib, roll-away, refrigerator or any other concession (there will be an extra fee
for these items). If you are planning to make a trip out of it and would like to
stay at the hotel outside the main dates, please let us know at [email protected].
Online reservation link: http://www.hilton.com/en/hi/groups/personalized/S/
SNACMHH-5PSOC-20160727/index.jhtml?WT.mc_id=POG
nitive or physical development. In response, those same parents, proclaim #takethatcriduchat to their many posts and pic-
Transportation:
tures on FaceBook, Twitter, Instagram and other social media
at Bristol Street. The hotel offers a shuttle service from John Wayne/Orange
County Airport (SNA).
sites when their child or adult with the syndrome accomplish and
exceed all expectations.
A star is born!! Southern California, home to Hollywood, Disneyland, miles and miles of sandy beaches and great weather (have
you ever seen it rain on the Rose Bowl?) is the site of the 31st
annual conference. Costa Mesa, in the heart of Orange County,
and home to the Orange County Fair will be the location of this
star studded event. Who are the stars? The children and adults
with 5p– of course. Movie Posters of the stars will be seen
throughout the venue. A red carpet event complete with papa-
The Hilton Costa Mesa is just south of the 405 Freeway
Backlot Party:
This year, the family outing will be at the Irvine Regional
Park. The park is nestled among a grove of heritage Oak and Sycamore trees.
The rolling foothills surrounding the park are filled with a variety of wildlife.
Trees and shaded turf areas provide a serene setting for leisure activities. Santiago Creek bisects the park and a pond with stone-work waterfall and foot
bridge is located in the center of the park. The variety of landscape greatly
enhances the park's beauty. The park offers a train ride, zoo, horseback riding,
walking trails and playground. Lunch will be provided. Transportation will be
provided, or you can drive yourself.
Scholarships: The 5p– Society is happy to announce that there will be five
(5) scholarships available for families who would like to attend the conference
but could use a little of financial assistance. The scholarship will assist with the
hotel fee for three nights and the basic registration fee for up to two adults
and two children. For more info and an application please send an email to
[email protected] or download a form at
www.5pminus2016conference.blogspot.com. Thank you to the families who
donates to the Scholarship program.
Static Characters Child Care:
Complimentary child care will be available for your child or adult with Cri du Chat Syndrome, as well as their siblings.
Child care permission form will be included in your confirmation packet.
Film “Extras” (Sibling) Outing:
Saturday, 9-3—Plans are still underway
for the sibling outing. With so much to do in Orange County there will be something fun planned. More information and permission slip will be included in your
confirmation packet.
Event Schedule
Thursday, July 28, 2016
5:00 PM—10:00 PM
5:00 PM—7:00 PM
7:00 PM—9:00 PM
7 PM—9 PM
7 PM—11 PM
Dynamic Characters Special Outing:
Friday, July 29, 2016
The Academy Awards of 5p– Society:
7:30 AM—12:00 PM
8:15 AM—9:00 AM
9:00 AM—10:20 AM
9:00 AM—11:30 AM
10:30 AM—11:50 AM
Saturday, 11-2—Thanks to
Abigail Vaden for her fundraising efforts, the teens and adults with Cri du Chat Syndrome will be going on a special bowling outing on Saturday. More information
and permission slip will be included in your confirmation packet.
The 5p– Society is now accepting nominations for the 5p– Society Hall of Fame.
Categories: Oscar Award (Parent(s) of the Year), Emmy Award (Grandparent(s) of
the Year), Golden Globe Award (Sibling of the Year )and Tony Award (Super Hero of
the Year). The Tony Award is for a caregiver, volunteer, other family member, doctor, friend, or therapist who has gone above and beyond in support of the 5p– Society. Application due date is June 25th. The form can be found on our website
www.fivepminus.org/Next_Conference and blogspot
www.5pminus2016conference.blogspot.com., or contact [email protected].
Green Room Reception: Join us on Thursday evening from 5-7 for a Welcome Reception where you can meet and greet with your 5p– family.
Post-Production Cast Party & After Party Reception:
The main
event (banquet & family dance) of the conference happens Saturday evening. The
attire is always casual. There will be a Red Carpet and lots of paparazzi, make sure
you are camera ready!!
Round Characters Volunteer Opportunities:
Volunteers are needed for child care throughout the conference. If you are bringing some extra family
members or know of anyone local who can give an hour or two please contact the
5p– Society office at (888)970-0777 or send Laura an email at [email protected].
Movie Posters: Movie Posters will be created and displayed throughout the
venue. Please send your jpeg picture of your child or adult with Cri du Chat/5p- to
Laura at [email protected].
12:00 PM—4:00 PM
4:00 PM—6:00 PM
7:00 PM—11:00 PM
8:00 PM—11: PM
Registration
Green Room Reception (Welcome Reception)
New Family Orientation Kent Nicholls, Founder 5p– Society
Sibling Mixer
AmySue’s Place Open (Hospitality Suite)
Child Care Stages 1-5 open
Call Time
Parent Panels (Age)
Sibling Workshop
Mom’s Workshop
Dad’s Workshop
Family Outing—Irvine Park (lunch provided)
Grandparents Workshop
AmySue’s Place Open
Board of Directors Meeting
Saturday, July 30, 2016
7:30 AM—12:00 PM
8:00 AM—9:00 AM
9:00 AM—10:20 AM
10:30 AM—11:50 AM
12:00 PM—2:00 PM
12:00 PM—2:00 PM
2:00 PM—5:00 PM
2:00 PM—3:20 PM
3:30 PM—4:50 PM
5:30 PM—6:30 PM
6:30 PM—10:00 PM
9:00 PM—11:00 PM
Child Care Stages 1-5 open
General Meeting of the Members—Awards
Break Out Sessions
Break Out Sessions
Lunch on your own
Professional Advisory Board Lunch/Volunteer Lunch
Child Care Stages 1-5 Open
Break Out Sessions
Professional Panel
Picture Session
Banquet and Family Dance and Raffles
AmySue’s Place Open
Sunday, July 31, 2016
9:00 AM—12:00 PM
Special Presentation: ABA Therapy—Dr. AmySue Reilly
That’s a Wrap
Pictures
Talk about Milwaukee 2017
Meet the Speakers
Kent Nicholls—New Family Orientation
Kent Nicholls
Kent is the founder of the 5p– Society and a parent to Kellie, a
young adult with 5p– Syndrome. Kent is a Board of Director and
Chair of the Nomination Committee. If this is your first time to a
conference you will not want to miss this session.
Dennis Campbell, Ph.D.—Cri du Chat 101; Transition
Dennis Campbell
Dennis is an Associate Professor of Special Education at the University of South Alabama and a parent to Amy, a young adult
with 5p– Syndrome. Dr. Campbell also chairs the Professional
Advisory Board for the 5P Minus Society
Geoff Towers, MD—Puberty and Cri du Chat Syndrome
Geoff Towers
Dr. Towers is a Gynecologist with the United States Air Force at
Wright Patterson AFB and a parent to Taylor, a young adult with
5p– Syndrome. Dr. Towers also serves on the Professional Advisory Committee for the 5P Minus Society.
AmySue Reilly, Ph.D.—Transition; ABA Therapy
AmySue Reilly
AmySue is an Associate Professor of Special Education, Rehabilitation and Counseling at Auburn University. Dr. Reilly is a member of the Professional Advisory Committee for the 5p– Society.
The Hospitality Suite has been renamed AmySue’s Place in her
honor.
Douglas Sidell
Douglas Sidell, MD—ENT Manifestations of Cri du Chat Syndrome
Dr. Sidell is a Assistant Professor, Medical Center Line at Stanford
University/Lucile Packard Children’s Hospital. Dr. Sidell has
worked with patients with 5p– Syndrome.
Shanida Mathieu
Shanida Mathieu—The ins and outs of developing a good IEP
Shanida is the parent of Colin, a teenage son with 5p– Syndrome. She is a parent advocate with the State of Louisiana and
works with families to help them advocate for appropriate educational services. She presents a variety of workshops on many special education
topics.
Rebekah Rocha—Alternative therapies to help with seizure
control
Rebekah is a principal at an elementary school in Northern
California and parent to Giselle (Gigi) her 8 year old daughter
with 5p– Syndrome. She will be sharing her recent experience with alternative natural therapies.
Linda Karr-O’Connor—PECS: Picture Exchange
Communication System
Rebekah Rocha
Linda Karr-O’Connor
Linda is the Director, Scholarly Support and Research Assistant Program at UCLA Law Library and parent to Siobhan, a
young adult with 5p– Syndrome. Linda will provide you with
tips & tools on how to use PECS successfully.
Sonali Shah—Personalizing Speech & Language Programs
Sonali has been practicing pediatric speech and language
therapy in the Los Angeles and Orange County area for over
eight years. She is currently at Communication Bridges. Her
strength lies in application of theoretical and research methodologies to a clinical setting.
Sonali Shah
Maggie Keher
Maggie Keher—Therapeutic Horseback Riding & Its Benefits
Maggie is a PATH Certified Therapeutic Riding Instructor and
is a Certified Sign Language Interpreter. She currently teaches at the Back Bay Therapeutic Riding Club.
Alice Krezymon
Alice Krezymon—Therapeutic horseback riding and its benefits
Alice is a PATH Certified Therapeutic Riding Instructor. She
currently teaches at the Back Bay Therapeutic Riding Club.
She also trains and takes care of the horses at the center.
Karinna Barlow—Anat Baniel Method
Karinna is a Certified Anat Baniel Method Practitioner and
works on Neuromuscular Reorganization. She will show us
how the program works.
Karinna Barlow
HALL OF FAME AWARDS
Honoree Submission Form
To honor that special parent(s) with an Oscar, sibling with an Emmy , grandparent(s) with a Tony, or Volunteer of the year with a Golden Globe, who has
gone above and beyond the call of duty, for the 5p– Society, please fill out the
below form and submit it to 5p– Society, PO Box 268, Lakewood, California
90714 or send in an email to [email protected].
Please be sure to include all of the information, especially the honoree’s mailing address and phone number. Also, be sure to tell us how this person went
above and beyond for the 5p– Society. We look forward to hearing from you!
Awards will be presented at the 2016 National Conference in Costa Mesa, California.
Deadline for submission is: June 25, 2016
I am Nominating: _________________________________________ for
Parent
Sibling
Grandparent
FILM CREW REWARDS
Be part of the Film Crew, help fund the conference and get Rewards:
Special Effects Crew
Donate $1,500 and your ticket (family registration
of up to 2 adults and 2 children) will be waived.
Camera Crew
Donate $3,00 and your ticket (family registration
of up to 2 adults and 2 children) AND one night of
your hotel stay will be waived.
Volunteer of the Year
Full Name of Nominee:
Nominator’s Full Name:
__________________________
___________________________
Nominee’s Email Address:
Nominator’s Email Address:
__________________________
_____________________________
Nominee’s Phone Number:
Nominator’s Phone Number:
__________________________
_____________________________
Nominee’s Street Address:
Nominator’s Street Address:
__________________________
_____________________________
Nominee’s City / State / Zip:
Nominator’s City / State / Zip:
__________________________
_____________________________
On a separate piece of paper, can you please write your reason for
wanting to recognize this Nominee (We are looking for someone who has
gone above and beyond the call of duty to help the 5p- Society and Cri Du
Chat Syndrome as a whole.
Set Designer Crew
Donate $5,000 and your ticket (family registration
of up to 2 adults and 2 children) AND three nights
of your hotel stay will be waived.
Participation Requirements
1. Participants must be a member of the 5p–
Society and in good standing;
2. Participants to make their own reservations at
the hotel. The 5p– Society will make an internal change with the hotel.
3. ALL monies must be received by June 1, 2016.