2025 5p- Society Annual conference will be in Salt Lake City.
Dates: July 10-13, 2025
Location: Hilton Salt Lake City Center, 255 S W Temple St, Salt Lake City, UT 84101
Room rate: $169.00/night + taxes & service charges (rates guaranteed from July 7 to July 13 for those who would like to come early)(Please note that if you have more than two individuals in a room the price does increase — suggestion – don’t let them know you have more than two individuals).
The 2024 5p- Society Family Conference will be held in Des Moines, Iowa.
Dates: July 25-28, 2024
Location: Holiday Inn & Conference Center, 6111 Fleur Dr, Des Moines, IA 50321
Hotel Reservation Link: Room rates are $119.00 per night. Room availability 3 days before and 3 days after the event. If you have questions or concerns, please contact the 5p- Society office.
Conference Registration:
Thank you for your interest in attending the 2024 5p- Society Annual Conference. There will be several options for you below, please choose the option that fits you best. Click the box below to register.
Member Family Registration up to 4 individuals – $200.00**, each additional individual $50.00 (Two separate 5p- Society families cannot register under one registration form.)
Member Individual Registration – $100**
Non-Member Family Registration up to 4 individuals** – $300.00**, each additional individual $50.00 (Two separate 5p- Society families cannot register under one registration form.)
Non-Member Individual Registration – $150.00**
You will have the opportunity to let us know if you want a child’s or adults meal for your family member. Registrations received after July 1, 2024 will pay a late fee of $50.00. If you have any questions, please send an email to director@fivepminus.org.
Please make sure to provide your email addresses for each registrant. The email address will be used for the conference app.
**Please note that ratio Conference Registration DOES NOT include hotel reservations, travel or incidentals.**
Family Outing – We will stay on site for an immersive experience. More info coming soon . . .
Sibling Outing – Siblings will be going to a Virtual Reality Gaming Room to play VR games and to have lunch.
More information to come . . . .
Speaker information
Dr. Geoff Towers, 5p- Syndrome 101
Dr. AmySue Reilly, Effective Positive Behavior Modification
Dr. Nate Noble, “Breaking Down vs. Breaking Through”
(This presentation addresses parents and families in stress/crisis to help give them
strategies to ensure their struggle doesn’t end in breakdown)
Laura Castillo, Raising an Adult with 5p- Syndrome
Parent Professional Panel: Courtney Harms (Speech & Language Pathologist), Dr. Geoff Towers (OBGYN), Hollie Brookman (Dental Hygienist), Michelle Myatt (Special Ed Social Worker), Dr. AmySue Reilly (Behavior & Special Ed Specialist)
Hillary Harting – Talk to Me Technology
Kristin & Dr. Todd Evans – Moms and Dads workshop facilitators
MANDT System- De-escalation technique
Becky Owens, New Family Orientation
Thank you to our Sponsors
Hall of Fame
The Laramie & Michelle Sandbulte Family
Dr. William & Rita Bourne Family
Jill Rinaldi and Patrick Frank
All Star
Taylored Expressions
Golden Glove Sponsor
The Brandon & Christina Brown Family
The Hoover Family Charitable fund
Michael McBride
Silver Slugger
Patricia Strong
Ripple Coworking
Nancy Hyde
Senior Athlete of the Year
Norene Bauman
Junior Athlete of the Year
Sheri Roche
Dr. Todd & Kristin Evans
Rookie of the Year
And to all the individuals who have donated items for the raffle.
Raise Money and Get Rewarded
If you’d like to help the host families raise funds for the conference you can get rewarded for the amount you raise. Please click the button below
You will receive Conference Registration for four (4) individuals, and three (3) night stay at the conference hotel. You will also be mentioned in our conference materials and on the website.
• All Star: Raise $3,000
You will receive Conference Registration for four (4) individuals, and two-night stay at the conference hotel. You will also be mentioned in our conference materials and on the website.
• MVP: Raise $2,000
Get free registration for four individuals and one night at the conference hotel, listing on conference website, listing on event page.
• Golden Glove: Raise $1,000
Get free registration for four individuals, listing on conference website and listing on event signage.
• Silver Slugger: Raise $500.00
Donors will be listed on conference website, posted on conference app, signage at registration table and social media blast.
• Senior Athlete of the Year: Raise $250.00
Donors will be listed on conference website, posted on conference app and signage at registration table.
• Junior Athlete of the Year: Raise $100.00
Donors will be listed on conference website, and signage at registration table.>
• Rookie of the Year: In-kind donation
Donor will be listed on conference website and signage at registration table.
Reward recipients must make their own hotel reservations; internal changes will be made for payment of rooms. Each donor will receive a unique conference registration code. Conference registration form required.
If you registered or want to register but missed the live event, on or about October 1, 2021, all materials will be available in a dedicated Dropbox for all registrants. These materials will remain available until December 31, 2021, and include speaker presentation decks, recordings of the live presentations and links to the videos that were shown from our adults with 5p- and one of our siblings with a younger sister with 5p-.
You can still register until December 15, 2021 by clicking the BOOK ONLINE button above.
The 5p- Society is pleased to announce our annual two-day event will be hosted virtually this year!
When & Where?
Saturday, Sept. 18 & Sunday, Sept. 19
Saturday times: 9:00AM-6:30PM Pacific Time Zone/12:00PM- 9:30PM Eastern Time Zone
Sunday times: 9:00AM-4:30PM Pacific Time Zone/12:00PM-7:30PM Eastern Time Zone
Zoom details provided to registrants
Who should attend?
Individuals with 5p- Syndrome
Family of children & adults with 5p- Syndrome
Friends of individuals with 5p- Syndrome
Caretakers, therapists, teachers & medical professionals
Why should I attend?
Throughout the event, we plan to have our very popular parent sessions, a place for parents to interact with each other and talk, engage, help, network and learn from each other in a virtual space.
We also plan to have several presentations on topics of interest to the 5p- community. These presentations will be designed to last approximately 30 min with live Q&A time to follow. The presentations themselves will either be live or pre-recorded.
Join us for social time with Virtual Coffee Breaks where families can interact and chat. Get ready to dance at our Virtual Dance.
What’s on the schedule?
The finalized schedule will be shared in the coming weeks as speakers and events are confirmed. Some of the confirmed topics include:
Welcome to My World – a program to help instill empathy as a person navigates what it is like to have a disability.
What is the cost to attend?
Note that registered attendees will have access to presentations that are recorded and available for three months after the event, in case you cannot attend live. You can register at anytime now until December 15, 2021.
$25.00 per email- 5p- Society Members
$50.00 per email – Non-Members (Opportunity to register as a Member for $25.00)
$50.00 each – Professionals
How can I sponsor?
We are actively looking for Virtual Conference Sponsors to assist us with the technological costs. If you know of any business who may be interested, or if you have any questions or concerns, please contact Michelle Myatt at mmyatt5pminussociety@gmail.com or direct them to our dedicated sponsor page.
Thank you to our Sponsors!!
The Mayes Family
Protector:
The Batdorff Family, North Carolina
The Bowdish Family
The Holley Family
The Topping-Shuetz Family
Champion:
The Arango Family, Florida
Conference Agenda
*Subject to Change
All times are in US Pacific and Eastern Times
SATURDAY, SEPTEMBER 18, 2021
9:00am – 9:50am PT
12:00pm – 12:50pm ET
Virtual Welcome
Nick Wallace, President 5p- Society
Meet a few of our very special friends
10:00am – 10:50am PT
1:00pm – 1:50pm ET
Genetics and Researching 5p- Syndrome
Sean Fox, Ph.D., Biomedical Sciences,
East Tennessee State University
11:00am – 11:50am PT
2:00pm – 2:50pm ET
5p- Syndrome and Infections: Research Update
András Spaan, M.D., Ph.D.,
The Rockefeller Institute, New York
12:00pm – 12:20pm PT
3:00pm – 3:20pm ET
Virtual Coffee Break
12:30pm – 1:20 pm PT
3:30pm – 4:20pm ET
Physical Therapy and 5p- Syndrome: Research Findings
Laurel D. Abbruzzesse, PT, Ed.D,
Columbia University, New York
1:30pm – 2:20 pm PT
4:30pm – 5:20 pm ET
Cortical Visual Impairments and Neurological Vision Issues
Alex Olson & Lisa Linda, CVVI
2:30pm – 3:30pm PT
5:30pm – 6:30pm ET
Choose one
Mom’s Meetup – Let’s Talk Self-Care Facilitated by Cristol O’Loughlin, Angel Aid
Grandparent’s Support Session
3:30pm – 4:30pm PT
6:30pm – 7:30pm ET
Dinner/Snack Break
4:30pm – 5:30pm PT
7:30pm – 8:30pm ET
Virtual Dance
5:30pm – 6:30pm PT
8:30pm – 9:30 pm ET
Virtual Social Hour
SUNDAY, SEPTEMBER 19, 2021
9:00am – 9:50am PT
12:00pm – 12:50pm ET
Welcome Back
Laura Castillo, Executive Director
Meet some of our very special individuals
10:00am – 10:50am PT
1:00pm – 1:50pm ET
Navigating Transition through Adulthood
Dennis Campbell, Ph.D., Chair Professional Advisory Board, Retired University of South Alabama
11:00am – 11:50am PT
2:00pm – 2:50pm ET
Effective Positive Behavior Therapy
AmySue Reilly, Ph.D., Retired, Auburn University
12:00pm – 12:20pm PT
3:00pm – 3:20pm ET
Virtual Coffee Break
12:30pm – 1:20pm PT
3:30pm – 4:20pm ET
Special Needs Trust v. ABLE Act
Kacy Seitz
1:30pm – 2:20pm PT
4:30pm – 5:20pm ET
Welcome to My World
Becky Owens, Board Member
2:30pm – 3:20pm PT
5:30pm – 6:20pm ET
Choose one
Medically Fragile – Translocation Parent Panel
Dad’s Talk – An open dialogue with Dad’s regarding raising a child with 5p-
Announcing the 9th Annual Virtual 5k for 5p- benefiting 5p- Society to be held during International 5p- Syndrome Awareness Month of May 2024!
So you may be wondering what exactly IS a Virtual 5k?
It is just like any other 5k (or 3.1 miles), except there is no official race location (and no early start times)! The virtual part of this means no traveling or fighting crowds. It also means you get to choose where, with whom, and even how you want to go that 3.1 miles!
The Virtual 5k for 5p- can be done at any time and on any day during Awareness Week. It can even be done in increments throughout the course of the week! Do you walk to school in the morning, around town during the day, or around the office? How about a Over-the-Line Tournament? Great! Keep track of your distance until you hit the 3.1 miles.
How To Participate
This event is open to individuals of all ages and abilities. Once you register, either as an individual or as part of a team, you are set! Team Captains will be in charge of hosting their local events, if they choose to gather as a group.
Since this is not a sanctioned event, there is no penalty if you are unable to complete any or all of the 5k. However, during Awareness Week, we will be asking participants to post pictures of you on your 5k route. This is completely optional – but since our goal is to bring awareness to 5p- Syndrome, we want to do just that! And by using the special #5pminus5k hashtag on your photos, we will be able to keep up with the fun! Stripy socks (one short, one long) are also encouraged, which you can also share on social media using #stripysocks!
Registration Options
(Registration will open February 1, 2024)
$5 Pinch Runner Registration
$25 Bases Loaded USA Registration – Includes registration fee, shirt, and custom 2024 Virtual 5k for 5p- race medal (U.S. participants only)
$35 Home Run USA Registration – Includes registration fee, shirt, a pair of custom striped socks and a custom 2024 Virtual 5k for 5p- race medal (U.S. participants only)
$40 Bases Loaded International Registration – Includes registration fee, shirt, and custom 2024 Virtual 5k for 5p- race medal (International participants)
$50 Home Run International Registration – Includes registration fee, shirt, a pair of custom striped socks and a custom 2024 Virtual 5k for 5p- race medal (International participants).
Become a Sponsor of the Virtual 5k for 5p- 2023 Event. Sponsorship Levels:
$100.00 Golden Glove Sponsor
The Golden Glove sponsor includes two registrations for participants from your company/organization. Logo will be placed on running website and on the back of race shirts.
$250.00 Silver Slugger Sponsor
The Silver Slugger sponsorship includes 3 registrations for participants from your company/organization. Logo will be placed on running website and on back of race shirts. Social media blast on our Facebook and Instagram.
$500.00 All Star Sponsor
The All Star sponsor includes 5 registrations for participants from company/organization. Logo will be placed on running website and on back of race shirts. Multiple promotional post on 5p- social media during awareness
$1,000.00 World Series Sponsor
The World Series includes 10 registrations for your company/organization. Logo will be placed on running website and on back of race shirts. Multiple promotional post on 5p- social media during awareness week.
Two ways to sponsor, join the Virtual 5k for 5p- 2024 event (registration link above) and add your sponsorship with your registration, or click the box below
Due to the COVID-19 Pandemic, the 5p- Society postponed its 2020 Chicago conference to 2021.
The 5p- Society is happy to announce that we will be hosting a Virtual 5p- Syndrome Conference to provide a few social events, educational events and networking events in two days to replace and fill a void for those individuals who would like to continue to interact with each other.
Date: September 12 & 13, 2020
Times: September 12, 2020 – 11:30 AM to 9:00 PM (EST)
September 13, 2020 – 11:30 AM to 5:00 PM (EST)
Registration required: Cost will be as follows:
5p- Society Members: $25.00 (per email address)
Non-Members: $50.00 (per email address; with $25.00 going towards membership fee)
Professionals: $50.00
REGISTRATION DEADLINE 8/31/2020
Schedule
Please click on the link below to view the schedule. Please note that all times are in Eastern Standard Time.
AmySue Reilly, Ph.D. – Effective Positive Behavior Support
Geoff Towers, MD – Puberty in Girls with 5p-
Laurel Daniels Abbruzzese, PT, Ed.D – Physical Therapy and 5p- Syndrome: Research Findings
András N. Spaan, MD, PhD – 5p- Syndrome & Infections Study Update
Stephen Furnari, Esq. – Guardianship & Cri du Chat: How to Best Protect your Child When He or She Turns 18
Michelle Myatt – Coping with COVID-19 &Homeschooling
Becky Owens – “Welcome to My World”
Parent Panel Information
During our annual conferences one of our most popular sessions would be the Parent Panels. For those of you who do not know what a parent panel is, it is like an in-person Facebook group.
A chance to discuss topics of interest with families who are in your child’s/adult’s age range.
An opportunity to use other families as sounding boards to help answer any questions or concerns you may have about a wide array of topics related to Cri Du Chat Syndrome.
For those of you who have been to a conference, what would you tell a new family about the parent panels?
We will be releasing the schedule soon with the day and time of the Parent Panel for your child’s/adult’s age range. We can’t wait to meet you and learn more about you, your child/adult, your family and what questions you may have.
The 35th Annual In-Person 5p- Society Annual Conference will be held in Charlotte, North Carolina.
Host Family Message
Hey y’all!
We are proud to announce that the 2022 5P- Society’s annual conference will be held in Charlotte, NC at the Sonesta Charlotte Executive Park hotel. The Sonesta Charlotte is a beautiful, newly appointed hotel that is located just minutes away from uptown Charlotte and Southend, one of the city’s trendiest areas.
Charlotte is known as The Queen City, named after Queen Charlotte, as it was founded in 1768 by European colonists under King George III. To honor this, the conference theme will be “A Royal Celebration”. Charlotte is a wonderful, family-friendly city with something for people of all ages and interests. You will find beautiful parks, greenways, modern cityscapes, along with a variety of culturally eclectic areas, lively neighborhoods and suburbs all with a touch of southern heritage. There is no lack of sportsmanship in the area as Charlotte boasts five (soon to be six) professional sports teams, along with several college and university teams. While in Charlotte, you can expect to experience the urban lifestyle along with good ol’ southern hospitality. Charlotte’s truly got a lot! When visiting Charlotte there are several highlights to consider exploring:
W. & Rita Bourne Karen Hoover Brandon & Christina Brown & Family Russ & Amanda Bennett & Family Dennis & Joan Noonan Edwin & Debra Fischer Mary Jane King RTHT Investments, LLC Reid Boston Gloria Griffin Debra Russell Angela & Nick Wallace Linda Harris
Would you like to be a Sponsor?
Raise Money for the Conference and Get Rewarded
Conference Rewards Program
We greatly appreciate any and all donations to assist the host families in making the conference a memorable event. We have a rewards program where you can be rewarded for your donations. Rewards consist of free registration to the conference for four individuals, free hotel rooms for nights of the conference, logo or name on back of conference shirt, listing on this website, listing on conference app and/or social media blasts.
Where do your monies go? Events include Friday Family Event, Sibling Events, Breakfast for all three days of the conference, Child Care needs, Welcome Reception, Conference Banquet and Family Dance to name a few. In kind donations can help with Child Care and Hospitality Suite.
Reward Categories
King Reward: Donate $5,000 and get free registration for four individuals, three nights at the conference hotel, listing on the conference website, logo on conference t-shirt and listing on event signage.
Queen Reward: Donate $3,000 and get free registration for four individuals, two nights at the conference hotel, listing on the conference website, logo on conference t-shirt and listing on event signage.
Prince Reward: Donate $2,000 and get free registration for four individuals, one night at the conference hotel, listing on the conference website, logo on conference t-shirt and listing on event signage.
Princess Reward: Donate $1,000 and get free registration for four individuals, listing on the conference website, logo on conference t-shirt and listing on event signage.
Duke Reward: Donate $500 and you will be listed on conference website, back of conference t-shirt, posted on conference app, signage at registration table and social media blast.
Duchess Reward: Donate $250 and you will be listed on the conference website, back of conference t-shirt, posted on conference app and signage at registration table.
Knight Reward: Donate $100 and you will be listed on the conference website, back of the conference t-shirt and signage at registration table.
Jester Reward: In-Kind Donations will be listed on the conference website and signage at the registration table.
Click on the button below to go to the donation page.
Join us for the 38th annual 5p- Society conference and get a “Taste of Chicago.”
Conference 2023 will be held at the beautiful Eaglewood Resort and Spa, where the host families will bring the best of Chicago to you.
Chicago-style hot dogs, Italian beef, deep dish pizza, Garrett’s Popcorn and cool off with a delicious Italian ice.
Families can enjoy movies while floating in the pool, a round of golf, or cosmic bowling. You will be able to relax with the rejuvenating spa treatment or a fun yoga class. We may even have a visit from Chicago’s number one sports mascots.
We hope to see you in Sweet Home Chicago, July 13-16, 2023.
Your Chicago Host Families
The Cutrara Family
The Jones Family
The Burke Family
The Winders Family
T H U R S D A Y , J U L Y 1 3 , 2 0 2 3
5:00 PM Registration and Welcome Reception
7:00 PM New to a 5p- Conference join us for the New Family Orientation
7:00 PM Siblings get the chance to meet each other – Bowling alley on site rec center
7:00 PM Hospitality Suite (flow)
F R I D A Y , J U L Y 1 4 , 2 0 2 3
7:30 AM-12:00 PM Kid Care open
8:30 AM-12:00 PM meeting, networking and learning from each other with our various Workshops
9:00 AM – 5:00 PM Blood collection for research (Simon Searchlight Foundation)
12:00 PM-3:30 PM, join us for a Family Fun Event. We will be “tasting” some authentic foods from Chicago, Food Truck Style on site and having one large picnic with fun and games.
4:00 PM Grandparents Workshop
Dinner is on your own. Feel free to explore Chicago.
7:00 PM Hospitality Suite (flow)
8:00 PM Board of Directors meeting
S A T U R D A Y , J U L Y 1 5 , 2 0 2 3
7:30 AM – 12:00 PM Kid Care open for morning sessions
9:00 AM Parents, Todd & Kristin Evans will be our keynote speakers, presenting on Beyond Surviving to Living Fully.
9:00 AM – 5:00 PM Blood draws for research (Simon Searchlight Foundation)
10:30 AM -5:00 PM three tracks of speakers, each with different topics and for different audiences.
10:00 AM – 4:00 PM Siblings will be heading to a trampoline park, lunch included.
12:00 PM-2:00 PM Lunch is on your own
2:00 PM-5:00 PM Kid Care open for afternoon sessions
6:30 PM-9:30 PM Banquet, family dance, general membership meeting and awards.
Photographer will be available for family pictures.
We will have our Raffles (ticket & silent auction)
9:00 PM Hospitality Suite (flow)
S U N D A Y , J U L Y 1 6 , 2 0 2 3
9:00 AM-12:00 PM Closing remarks by various individuals with 5p- Syndrome.
These special speakers are slated to inspire you.
Don’t forget your camera for some special pictures with your new friends.
Let’s talk about the Iowa 2024.
Speakers & Topics
(Bios in the Conference Brochure)
Todd Evans, PhD, MA and Kristin Evans, MA, MS, LMSW
Dr. Todd Evans: facilitating the Dad’s Workshop
Kristin: facilitating the Mom’s Workshop
Todd & Kristin: Beyond Surviving to Living Fully
Dennis Campbell, Ph.D. Dr. Dennis Campbell: (1) 5p- Syndrome 101 and (2) Transition
AmySue Reilly, Ph.D.
Dr. AmySue Reilly: Effective Behavior Modification
Hollie Brookman, RDH
Hollie: Improved Dental Checkups Begin at Home
Jeanine Geraci-Dubs
Jeanine: Charting the Journey – Special Needs Planning Program
Carly Lapin, Ph.D.
Dr. Carly Lapin: (1) Toilet Training and (2) Managing Challenging Behaviors
Claire Conley
Claire: Neuromovement for the 5p- syndrome child – Anat Baniel Theory
Laura Castillo
Laura: Roundtable – Raising Adults with 5p- Syndrome
The 5p– Society is happy to sponsor five Regional Family Get-Togethers throughout North America to help families connect, share experiences and create friendships.
Western Regional Family Get-Together Information
Date: Saturday, April 27, 2019
Time: 11:00 AM to 3:00 PM
Location: Justin Myron E. Leavitt and Jaycee Community Park, 2100 E. St. Louis Ave, Las Vegas, NV 89104
Host: Kathryn Gladden
RSVP: Phone or Text: 702-845-5019 or Email: kat.knapp@hotmail.com
The is a FREE event for families and friends of an individual with Cri du Chat Syndrome.
We look forward to hosting this Family Get-Together and meeting new friends in Las Vegas. We hope you can join us. The park has adaptive play equipment and a water play area. We will be serving lunch. Then at 3:00 in the same park, Challenger Little League will have a baseball game for the CDC kids and their siblings.
Many families have found valuable information and support through the internet. The resources listed below provide the opportunity to leave a message or a question concerning a problem that a parent may have with their child and get a response from other experienced parents.
5P- Society Facebook Fan PageCri du Chat / 5P- Society Facebook Closed Group Page
Members are screened to provide privacy.
To join, please send a request via Facebook.
Yahoo Support Group
Taylored Expressions
