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.

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

Midwest Regional Family Get-Together

Location:  Village Park, 17th Ave NW & 4th St. NW Altoona, IA 50009

Date & Time:  Saturday, May 4, 2019 10:00AM to 3:00PM

Host Families:  Michelle Sandbulte and  Taylor VanBruggen

This is a FREE event.

Village Park is an outdoor park with a large playground and shelters.  We will have visitors from Courage League and fun activities for the kids.  Lunch will be served.

RSVP to Shari Campbell at djcshc@charter.net

The conference committee is very excited about hosting the 2019 conference in Portland next July!  We have many great speaker ideas and will continue to work over the next several months to confirm those as well as other details for the conference, so stay tuned!  What we CAN promise, is that you will have a great time in Portland and the Pacific Northwest.  There is so much to see and do here!

Dates:  July 18 – 21, 2019

Location:  DoubleTree Hilton Hotel, 1000 NE Multnomah Street, Portland, Oregon

Room Rates:  Between $169 (single queen bed only) & $189 (limited amount of two queen bedded rooms) depending on room type

Hotel Reservation Information:  You can make your reservations online or by calling the hotel at (503) 281-6111.   The online link is:  https://doubletree.hilton.com/en/dt/groups/personalized/R/RLLC-DT-5PS-20190714/index.jhtml?WT.mc_id=POG

Download the conference brochure here:  2019 Conference Brochure

Conference Registration:

Member Registration: 

• Family registration for two to four family members – $200.00 ($250.00 after July 1, 2019) https://5psociety.regfox.com/2019-5p-annual-conference-member-registration

$50.00 for each additional person (child or adult)

• Single Individual registration – $100.00 ($150.00 after July 1, 2019) (this is for a single registrant only, may not add any additional individuals to the registration – use family registration instead)  https://5psociety.regfox.com/2019-5p-annual-conference—member-individual-registration

Non-Member Registration:

• Family registration for two to four family members – $250.00 ($300.00 after July 1, 2019)  https://5psociety.regfox.com/2019-5p-annual-conference—non-member-registration

$50.00 for each additional person (child or adult)

• Single Individual registration – $150.00 ($200 after July 1, 2019) (this is for a single registrant only, may not add any additional individuals to the registration – use family registration instead) https://5psociety.regfox.com/2019-5p-annual-conference-non-member-individual-registration

Paper Registration form can be found here

T-Shirt Order form

If you do not plan on attending the conference, but would like a t-shirt, please fill out and return this T-Shirt Order Form before June 15, 2019.

Transportation options:  If you fly in Portland International Airport (PDX) you can hop on the Max Light Rail https://trimet.org/max/index.htm#map.

You will want to hop on the MAX RED LINE, Lloyd Center/NE 11th Ave MAX station, Stop ID 8374.  This will drop you off at the hotel and takes approximately 30 minutes.

As an alternative, you can fly into Seattle’s International Airport also known as SeaTac and either rent a vehicle to drive down to the DoubleTree (approximately 2 1/2 hours), or take the Bolt Bus (https://www.boltbus.com/default.aspx).  The Bolt cost approximately $35.00 round trip per person.  It can accommodate wheelchairs.  It also has plug-in charging for your devices, extra legroom, reserved seating.  There is Wifi on board.  Trip takes a little over 3 hours to get from the SeaTac to the Doubletree.

Family Event:  Barbecue & Pioneer activities at the Oregon Trail Interpretive Center (https://www.historicoregoncity.org/)

Sibling Outing: Oaks Amusement Park: (http://oakspark.com/builder/projects/template/)

Other Helpful Links:

Hotel Homepage — http://doubletree3.hilton.com/en/hotels/oregon/doubletree-by-hilton-hotel-portland-RLLC-DT/index.html

Travel Portland Video (shown at 2018 conference) –https://www.youtube.com/watch?v=0fMJ_JwGc_g

TriMet MAX Homepage (our public light rail system) – https://trimet.org/max/index.htm   https://trimet.org/#/planner

Travel Portland (our Visitor Center/Information Organization) – https://www.travelportland.com/https://www.travelportland.com/article/portland-international-airport-pdx/

See you in July!!

Questions?  Please contact Laura at director@fivepminus.org.

Chef Derek Stevens and other Pittsburgh chefs are holding a fundraising dinner at Union Standard restaurant this Sunday, December 3^rd.

Proceeds to benefit the 2018 conference.

If you live in Illinois or surrounding areas and would like to join the Jones family, I know they’d love to have you join them for their annual 5k for 5p on October 7. This would be a great opportunity for you to meet other family and have some fun!!

For more information please visit:  https://www.wades5kfor5p.com/

2018 5p- Society Conference Host Family member – Derek Stevens is raising funds for the Conference of Champions!!

For the second year in a row, Derek will be running the JFK 50 mile ultra marathon on November 18 and will again be pushing his body to it’s limits, and using this unique opportunity to bring awareness to 5 P Minus while raising funds to host the ‘Conference of Champions’. Derek loves running ultras and feel incredibly lucky to even have the chance to attempt these endurance events. For him it is a race against himself, where he has the chance to push his personal limits, both physically and mentally. While these challenges are certainly very difficult (no matter how much he trains) they really pale in comparison to real life challenges people with 5 P- or any other disability face every single day. Especially his daughter Helena.  It is with that in mind that Derek tries his best to dedicate himself to helping organizations like The 5P minus Society and their efforts to help affected individuals and their families.

To learn more and donate, please visit:  https://www.razoo.com/story/Cxofbg

To learn more information about the 2018 conference please visit https://fivepminus.org/event/2018-5p-society-conference/

Please join us for the 6th Annual Be A Voice for 5p- Event!

Saturday, March 16, 2019
6-9pm

Barnaby’s 
1901 Old West Chester Pike
Havertown, PA 19083

Tickets are $30 for adults ($35 at the door). Kids tickets ages 5-17 are $15 each

Register for this event by calling Heather Grasso at 610-659-4865.

Thank you for your continued support! See you there! 

International 5p- Syndrome Awareness Month is the month of May 2024

International 5p- Syndrome Awareness Day is May 5th.

Each year the 5p- Society promotes a week of International awareness of 5P- Syndrome, or Cri du Chat. This purpose of this week is to raise awareness and encourage support of those with the Syndrome.  It also marks the 61st year of the finding of Cri du Chat Syndrome by Dr. Jerome Lejeune.

Members and supporters of the 5P- Society are encouraged to participate in the following campaigns:

Submit a Proclamation to Declare May 5 as 5p- Syndrome Awareness Day with your State Governor

Download this document and follow the steps and ask your State Governor to declare May 5 as 5p- Syndrome Awareness Day.

5p- Syndrome Proclamation Language 2024

Press Release

Download this Press Release and send to your local newspapers.  You will have an area where you can personalize the Press Release with your own information.

2024 Press Release (coming soon)

Share information cards:

Please download, print and share these fact cards with your family, friends, co-workers and general public.  Pass them out along with C5 during his travels.

• First Responder Information Card
• 5p- Syndrome Fact Card (postcard size)

I Can Video

View and share our “I Can” video that was produced in conjunction with the 50th Anniversary of the discovery of 5p- Syndrome (Cri du Chat Syndrome).

•  Link to video

Striped Sock Campaign on May 5th

•  Wear striped socks, one long and one short. The short sock represents the partially deleted fifth chromosomes. Post pictures on Social Media! #stripysocks #cdcsstripysocks

Virtual 5K for 5P-

Click here for more information

Faces of 5p- Campaign

This year we will be featuring your kiddos on their own Trading Card as an MVP of the C5 Sluggers.  Start thinking about what you’d like to HIGHLIGHT about your loved one with 5p- syndrome.

Click here to get the Faces of 5p- Awareness Campaign Info to fill out and return to director@fivepminus.org

Where in the World is C5?

Pose with a picture of our mascot C5 and post on Social Media #SeeC5 #5pminusawareness #stripysocks #groovy5kfor5p #thatshowweroll5kfor5p

• Download a picture of C5
  
•  C5 coloring Page for students
•  kids document 2024 coming soon

Pittsburgh, Pennsylvania

http://www.visitpittsburgh.com/

The 5p- Society 2018 Conference will be held on July 26-29 at the Pittsburgh Marriott City Center, 112 Washington Place, Pittsburgh, PA 15219,

PLEASE NOTE THAT THE CONFERENCE HOTEL IS SOLD OUT OF ROOMS FOR THE DATES OF THE CONFERENCE AT THE REDUCED RATE OF $142.00 PER NIGHT

Make your reservations by calling (412) 471-4000.

Please note there is also an $18.00 per night parking rate with in and out privileges (it says $22, but it is $18).

Registration Opens March 1, 2018

Please download conference brochure here for more information

Dates to remember

Early bird discounted registration due by July 1^st.

Register before July 1st to pay the discounted Family Registration rate of $150.00 for members, $200.00 for non-members, $75.00 for Professionals.  After July 1st regular Family Registration rates will take effect $200.00 for members, $250.00 for non-members and $100.00 for Professionals.

Family Registration:

Family registration is for UP to 2 adults and 2 children (under 17).  Additional adults are $50.00 and additional children are $25.00.Please note that a child is considered under 17 and will receive a child’s meal at the banquet. If you would like your “child” who is under 17 to receive an adult meal, please indicated under “Meal Selection.” You will be billed an additional $25.00. We recognize that some adults with Cri du Chat Syndrome may need a soft meal and the children’s meal would be a better choice for them. If this is the case, please register them as a “child” and indicate under “Special Dietary Needs.” Please fill out completely for each person who is attending. If you require additional information, please send an email to director@fivepminus.org.

Please use the paper registration link if you are paying by check or money order.  If you are paying by credit or debit card, choose one of the following online links:

5p- Society Members Registration link

Non-Member Registration link

Professional Registration link

Scholarship Opportunities to attend the conference

Each year the 5p- Society provides opportunity for families to attend the conference through their Financial Assistance Scholarship program. This year the 5p- Society has received funding for five (5) scholarships.  The scholarships will pay for one hotel room for the three nights of the conference (Thursday, Friday & Saturday) and registration for two 2 adults and 2 children.  To review the guidelines and to apply please go to the 5p- Society Financial Assistance Application.

REWARDS PROGRAM

Raise money for the 2018 conference and get rewarded!

Pittsburgh Pirates Reward:  Raise $1500.00 and the 5p- Society will comp your registration fee for up to 2 adults and 2 children.

Pittsburgh Penguins Reward:  Raise $3,000.00 and the 5p- Society will comp your registration fee for up to 2 adults and 2 children and one night of your hotel stay.

Pittsburgh Steelers Reward:  Raise $5,000 and the 5p- Society will comp your registration fee for up to 2 adults and 2 children and 3 nights of your hotel stay.

THE CHAMPIONS OF 5P-

This year we will be preparing a picture of your child or adult with 5p-/Cri du Chat Syndrome on a Magazine Cover.  Please send your favorite picture to Laura at director@fivepminus.org.  Make sure it is in jpeg format and portrait pictures work the best.  Also, provide us with what you feel your child is a Champion of.

CONFERENCE OF CHAMPIONS

Yinz (you all) better red up (clean up) because the 5P- Society’s Annual Conference for 2018 will be held in Pittsburgh, PA at the Pittsburgh Marriott City Center. This hotel is located across from the PPG Paints Arena which is home of the 2016 and 2017 Back-to-Back Stanley Cup Champions, the Pittsburgh Penguins. While entering the city, guests will experience a breathtaking view of the city while driving in on one of our famous yellow bridges overlooking the three rivers. Pittsburgh is known as the City of Bridges, Steel City because of its well-known production of steel, and of course, the City of Champions!

Yinzers (Pittsburghers) are super proud of their sports and have a large fan base from all over the world. The Pittsburgh Steelers have won 6 Super Bowls, Penguins have 5 Stanley Cup wins, and the Pirates have won 5 World Series Championships.

The City of Champions has a lot to offer with endless options for entertainment:

• Pittsburgh Zoo & PPG Aquarium
• Point State Park
• Carnegie Museum of Natural History & Art
• Mount Washington
• Heinz History Center
• Rivers Casino
• Children’s Museum of Pittsburgh
• Sandcastle Waterpark
• Kennywood Amusement Park
• Carnegie Science Center
• Strip District
• Southside Works
• Molly’s Trolleys
• Duquesne Incline
• Gateway Clipper
• Three Rivers
• Just Ducky Tours
• Flight 93 Memorial (82 miles away)

Brush up on your Pittsburghese and join us Dahntahn (downtown).

We cannot wait to welcome our 5P- Family to the ‘Burgh to celebrate our Champions at the “Conference of Champions!”

Your Host Families are:

Derek Stevens & Marie Corrado
Johnna & Raeann Sleith
Patricia Fowler
John & Christina Yauch
Matt & Heather Grasso