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5p- Society 2021 Virtual Conference

 

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:

  • Cortical Visual Impairment & neurological vision issues
  • Genetics & 5p- Research
  • Physical Therapy & 5p- Syndrome
  • Special Needs Trust vs. ABLE Accounts
  • Transition through Adulthood
  • Positive Behavior Therapy
  • 5p- Syndrome and Infections
  • 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-

Virtual Coffee Shop

3:30pm – 4:30pm PT

6:30pm – 7:30pm ET

Closing Session

Meet some of our very special individuals

Download the CONFERENCE AGENDA

Click here to Register

After you register your confirmation email will provide you with the information you need to join the meeting.

Download the 5p- Society Virtual Conference 2021 mini brochure.

Read more

2021 Upper Midwest Regional Get Togethr

RSVP by contacting Jolene Towers at gnjtowers@aol.com or 937.241.3226

Read more

Virtual 5k for 5p-

Organize or participate in a Virtual 5K! Create a team, raise funds or host an event.

Register Now

About This Event

Announcing the 8th Annual Virtual 5k for 5p- benefiting 5p- Society to be held during International Cri du Chat Awareness Week, May 1-15!

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? 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 March 1, 2022)

  • $5 registration
  • $25 registration – Includes registration fee, shirt, and custom 2022 Virtual 5k for 5p- race medal (U.S. participants only)
  • $35 registration – Includes registration fee, shirt, a pair of custom striped socks and a custom 2022 Virtual 5k for 5p- race medal (U.S. participants only)
  • $40 registration – Includes registration fee, shirt, and custom 2022 Virtual 5k for 5p- race medal (International participants)
  • $50 registration – Includes registration fee, shirt, a pair of custom striped socks and a custom 2022 Virtual 5k for 5p- race medal (International participants).
  • For more information contact Laura at director@fivepminus.org.

Register Now

 

Thank you to our Sponsors

                                                                             

      

 

Thank you also for your Titanium Sponsorship to:

Josh & Katie Johnson       Marsona Horan        Kevin Legg       Tresia Lee

For up-to-date information visit and like us on FaceBook at www.facebook.com/Virtual5kfor5pminus

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Virtual 5p- Syndrome Conference 2020

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.

Virtual Conference schedule rev

Speakers

Dennis Campbell, Ph.D – Cri du Chat 101

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.

Thank you to our Sponsors!

The Owens Family from Oregon

The Sandbulte Family from Iowa

Donna Grasso, Grandparent from Pennsylvania

Bowdish Family from Ohio

Sparks Family from Texas

Furnari Family from Florida

Martinez Family and MTZ Graphics

 

If you are interested in assisting us as a Sponsor please contact Michelle Myatt at mmyatt5pminussociety@gmail.com or go directly to our dedicated sponsorship page:  https://5psociety.givingfuel.com/5p-society-2020-virtual-conference-sponsorship-page

 

Registration is NOW CLOSED.   Deadline to register was August 31, 2020.

 

 

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5p- Society Annual Conference – Charlotte, North Carolina July 2022

Save the dates:  July 14-17, 2022

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:

There are so many great places to visit and we can’t wait to share our city with y’all! We hope to see you in Charlotte!

Russ and Amanda Bennett
Brandon and Christina Brown
Zach and Maria Maxell
The Charlotte Conference Committee

Conference Details

Location:  Sonesta Charlotte Executive Park, 5700 Westpark Drive, Charlotte, North Carolina

Hotel Reservations:  Room rates are $149.00 (++) per night.  You can now make your hotel reservations online or by phone.

Click here to make HOTEL RESERVATIONS HERE.

Call Central Booking number at 1-800-766-3782 and request group “5p Minus Society July 2022”

Dates:  July 14 – July 17, 2022

If you’d like to assist with the conference, please contact Amanda Bennett (bennettat0808@gmail.com) or Christina Brown (cfbrown814@gmail.com).

Download the conference brochure below

2022 Conference Brochure-1

Meet the Speakers

Please view our slides show on our speakers and their topics.

Registration Form

Pre-registration will begin on February 1, 2022.  REGISTER HERE.

Register Now

Download the Conference Agenda below

CONFERENCE AGENDA

Sponsors & Donors

Thank you to our sponsors

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 RewardDonate $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.

Donate Now

 

Rewards Program Flyer

 

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5p- Society Conference – Chicago, Illinois July 2023

Join us for the 36th 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 13-17, 2023.

Your Chicago Host Families

 

Hotel Information:

Eaglewood Resort & Spa, 1401 Nordic Rd, Itasca, IL 60143, (630) 773-1400  https://www.eaglewoodresort.com/

Room rates are $149 a night

Click here for Room Reservation link 

More information coming soon!

Registration opens March 1, 2023

 

 

 

 

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Western Regional Family Get-Togert

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.

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2021 Southern Regional Family Get Together

RSVP by contacting Zeena Querbach at zeena.osmany@gmail.com or 512.922.5593

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2021 Northwest Regional Family Get-Together

To RSVP contact Kristen Turner at: kdt43967@gmail.com or 509.350.9811

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Northeast Regional Family Get-Together

The 5p- Society is happy to sponsor five Regional Family Get-Togethers throughout North America to help families connect, share experiences and create friendships.

This is a FREE event for families and friends of an individual with Cri du Chat Syndrome

Northeast Regional Family Get-Together

Date:  Saturday, May 25, 2019 from 11:00AM to 4:00PM.

Location:  Kidsability Center for Child Development, 500 Hallmark Drive, Waterloo, Ontario, Canada

Hosts:  Chris & Ana Wheaton and Krista & Bill Kells

RSVP:  Chris Wheaton:  Email kraymr@gmail.com or Phone:  519-590-3494

We will have a catered lunch.

Sandra Cordova who is a member for Toronto has volunteered her time to explain and answer any question about our ODSP (Ontario disabilities savings program).  We are also working on getting a face painter and bouncy castles.

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