To RSVP contact Kristen Turner at: kdt43967@gmail.com or 509.350.9811
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.
Midwest 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.
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.
2019 5p- Society Conference
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.
Courses for a Cause
Chef Derek Stevens and other Pittsburgh chefs are holding a fundraising dinner at Union Standard restaurant this Sunday, December 3rd.
Proceeds to benefit the 2018 conference.
Wades 5k for 5p
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/
Ultra Run for the Conference of Champions!
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/
Be A Voice for 5p-
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!
AWARENESS WEEK EVENTS
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.
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).
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
