Who we are
The 5p- Society was founded in 1986 by parents of children with 5p- Syndrome (Cri du Chat) with the intent of sharing information about the syndrome with other families that have been affected. The Society has actively encouraged its members to meet and share common experiences to benefit the individual with the syndrome and their family. The organization is run by a volunteer board of directors and one paid part-time staff person. It relies primarily on the donation of time and money by its members to exist. The 5p- Society is an international membership organization and maintains a database of 5p- families throughout North America. We currently have over 1000 families as members.
Our Society is a support organization that works diligently to spread awareness and provide valuable information, education and support for families, educators, and medical professionals. The society sponsors programs such as Family Support Services, Annual National Meetings, Newsletters, Grandparent Support Services, and a reference library to encourage and facilitate open communication for people and families dealing with 5P-/Cri du Chat Syndrome.
To maximize quality of life for individuals with 5p- and their families.
Professional Advisory Board
The 5p- Society has a volunteer Professional Advisory Board (PAB) comprised of professionals throughout the United States. The PAB oversees all research opportunities that are brought to the attention of the 5p- Society for review and approval. When a research opportunity is approved, it is then announced to the general membership. Members of the PAB also present at the 5p- Society’s annual conference.
Ambassador Outreach Program
The purpose of this program is to improve our outreach to local communities, medical professionals, teachers, and therapists. 5p- Ambassadors are responsible for spreading awareness of 5p- Syndrome by displaying information at health fairs, medical symposiums, school resource fairs, community events, and other resource events. They must conduct or participate in at least two events within one calendar year. Ambassadors are required to present in professional manner 5p- Syndrome information to a variety of physicians, community members, and educators. They must be prepared to present a powerpoint presentation when deemed appropriate. Ambassadors will be dealing directly with the public and healthcare professionals, answering questions, and presenting accurate information about 5p- Syndrome.
Ambassadors are responsible for uncovering exhibit opportunities within their area. They are responsible for tracking the number of people they reach, how many brochures they hand out, etc. for future grant purposes. They are also responsible for submitting the appropriate documentation for fees associated with the display to the executive director of the 5p- Society for approval. They must record their efforts and be prepared to report their successes to the executive director of the 5p- Society. Ambassadors may also be asked to write about their successes in the newsletter and speak about their experiences at annual conferences.
If you are interested in becoming an Ambassador for the 5p- Society, please fill out an application here. 5p- Ambassadors must be active members of the 5p- Society in good standing.
THANK YOU TO OUR CURRENT AMBASSADORS:
Angela De La Garza
San Antonio, Texas
Costa Mesa, California
St. Augustine, Florida
Mt. Juliet, Tennessee
Flanders, New Jersey
Los Angeles, California
The 5P- Society can act as a conduit for information and research for medical professionals and students. If you wish to request that the 5P- Society participate in a study or research project, please email firstname.lastname@example.org
Below is a list of some current projects that are being worked on related to 5P- Syndrome in educational and medical institutions. If you wish to learn more about these specific studies or receive updates, please email email@example.com.
- PCD & Cri du Chat Syndrome, Dr. Shapiro, McGill University, Montreal, Canada
- Clinical Measures of Balance and Functional Abilities in Children with CDCS, Dr. Abbruzzese, Columbia University, New York
- Social Behaviors in Adolescents and Adults with Developmental Disabilities, Dr. Fisher
- Prenatal blood test for Cri du Chat Syndrome – Natera Study
- 3D Facial Recognition Research Study for use as a future diagnostic tool. For more info go to https://www.facebase.org/project. To participate contact Dr. Pedro Sanchez, CHLA/USC as firstname.lastname@example.org.
- Form and Function of Communicative Behaviors in Individuals with Cri du Chat Syndrome. An online survey conducted by Juan Odendaal, a Master of Education Student out of Victoria University of Wellington, New Zealand and is being overseen by Dr. Jeffrey Sigafoos. For more information please download the participation information sheet here. To begin the survey, please click here.
If you are a new member, the 5p- Society, we invite you to participate in filling out our Family History Registry Questionnaire. This information will assist the Professional Advisory Committee and the Board of Directors in compiling a comprehensive database of information about different symptoms that children and adults with the syndrome may experience. It also assists the Executive Director when matching families who have requested specific symptom information (i.e., scoliosis) from the 5p- Society. The link below takes you to an adobe form to fill out and submit. If you would like a paper copy to fill out and send in please email email@example.com.
Thanks and your participation is greatly appreciated!
The 5P- Society is a not-for-profit organization that relies on donations by members to fund its outreach. Please help support our efforts by donating money, purchasing logo items in the store or participating in an upcoming fundraiser. (See our upcoming events calendar)
The 5P- Society holds several annual fundraisers:
80/20 Raffle – Email firstname.lastname@example.org for tickets
Virtual 5K for 5P-
Are you interested in holding a fundraiser? Below are a number of popular ideas for fundraisers.
- Wine Tasting and Silent Auction Events
- Golf Tournaments
- Silent Auctions
- Live Auctions
- Mouse Races
- Texas Hold’em Tournaments
- Spaghetti Dinners
- Restaurant fundraisers
- Bowling Tournament
- Trivia Night
- Family Fun Day
- Barbecue’s and Bounce houses
- Charity Runs/Walk
- Direct mailing (in lieu of birthday presents, etc.)
- Garage Sales
- Lemonade Stands
Pledge Form (pdf)
Item Donation Form (doc)
Sample Request Letter (doc)
If you need the IRS Letter of Determination for the 5p- Society, please contact email@example.com
Shop to Give:
Faces of Grace Calendars
We thank all of the individuals, families, and companies for your generous donations and fundraising efforts. You have been an integral part of the sustainability of the society. As the society continues to forge a path ahead for the awareness, advocacy, and support of our families with 5P- Syndrome, we continue to need financial support. Your financial support will allow us to fulfill our mission of supporting and advocating for the children and adults with 5P- Syndrome.
The 5P- Society would like to gratefully acknowledge these gifts from our caring friends and family members. Your generosity makes it possible for the 5P- Society to provide the very best for its children and families. Thank you!
Donors that provide the below levels of funding will be acknowledged in our Newsletter, and in our Conference materials.
- Bronze Level: $100-$499
- Silver Level: $500-$999
- Gold Level: $1000-$1999
- Platinum Level: $2000 and above
COPYING, PASTING, & COPYRIGHTS
The 5p- Society and the International Cri du Chat web sites, its databases, and the contents thereof are copyrighted by the 5p- Society, all rights reserved. No part of the web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial or nonprofit purposes without the express written permission of the 5p- Society.
Permission is hereby granted to print paper copies of the information you find here for your personal use such as to share with your loved one’s care team or education support members, provided that such content is in no way modified, and the credit for the source (5p- Society) and 5p- Society’s copyright notice are included on the printed copy (the automatically appear on the footer of every web site page). Any other electronic reproduction or other printed versions is strictly prohibited.
You can learn more about copyrights and the Internet here.
(c) 1986-2014 5p- Society
LINKING & iFRAMES
An iframe or equivalent display of a 5p- Society or International Cri du Chat web page may be made on your web page as long as a page is shown in its entirety and no attempt is made to remove the 5p- Society or International Cri du Chat graphics, navigation, or ownership identity. No direct linking to pictures and other individual elements is permitted without advance written permission.
Use of small portions, a sentence or two, of the content of this site may be made without advance notice as long as attribution is made to the 5p- Society. If the use is on another web site an acknowledgment and an active link back to the appropriate page at http://www.fivepminus.org or http://www.criduchat.org is required.
To maintain reference/link and bookmark integrity we try not to change the names of files used for each of our web pages, however we cannot guarantee that they will never change.
The following are trademarks of the 5p- Society:
|5p- Society||5p- Society Family Gathering|
|Five P Minus Society||International Cri du Chat|
|5p- Annual Conference||5pminus (Twitter handle and Instagram handle)|
The stylized text with the large 5P and the open “-“ attached to the P (left), (this may be accompanied by the words “National Support Organization for Families who have an Individual with Cri du Chat Syndrome” and the standalone “C5” Chromosome 5 Logo with distinct heart shaped world body (right).
The global International Cri Du Chat Awareness Week
These logos and trademarks are not to be used for any purpose, private or public, including fundraising for the 5p- Society or any other cause, without the express advance permission of the 5p- Society.
We are occasionally asked if the logo can be reproduced in some form for fundraising or other purposes. Permission must be requested in writing, in advance, and may or may not be granted after careful consideration of how the logo is proposed to be used. More details can be found here. If the proposal includes selling an item with some embodiment of the logo as a fund raiser, the details of the fund-raiser should also be provided, including any representations as to the tax deductibility of contributions.
The 5p- Society does not advocate, support, or practice unlawful discrimination based on age, ethnicity, gender, national origin, disability, race, size, religion, sexual orientation, or socioeconomic background.
We reserve the right to limit access to resources to any person(s) not respecting the values, decisions, ethics, or privacy of others.
Guidestar and the Sarbanes-Oxley Act require this policy … If any employee, volunteer, or affiliate [person] of the 5p- Society reasonably believes that some policy, practice, or activity of the 5p- Society is in violation of law, a written complaint must be filed by that person with the Executive Director or the Board President. It is the intent of 5p- Society to adhere to all laws and regulations that apply to the organization and the underlying purpose of this policy is to support the organization’s goal of legal compliance. The support of all persons is necessary to achieving compliance with various laws and regulations. A person is protected from retaliation only if the person brings the alleged unlawful activity, policy, or practice to the attention of the 5p- Society and provides the 5p- Society with a reasonable opportunity to investigate and correct the alleged unlawful activity. The protection described below is only available to persons that comply with this requirement. 5p- Society will not retaliate against a person who in good faith, has made a protest or raised a complaint against some practice of the 5p- Society, or of another individual or entity with whom the 5p- Society has a business relationship, on the basis of a reasonable belief that the practice is in violation of law, or a clear mandate of public policy. The 5p- Society will not retaliate against persons who disclose or threaten to disclose to a supervisor or a public body, any activity, policy, or practice of the 5p- Society that the employee reasonably believes is in violation of a law, or a rule, or regulation mandated pursuant to law or is in violation of a clear mandate of public policy concerning the health, safety, welfare, or protection of the environment.
DOCUMENT DESTRUCTION POLICY
Guidestar and the Sarbanes-Oxley Act require this policy … The 5p- Society acknowledges its responsibility to preserve information relating to litigation, audits and investigations. The Sarbanes-Oxley Act of July 30, 2002, makes it a crime to alter, cover up, falsify, or destroy any document to prevent its use in an official proceeding. Failure on the part of employees, volunteers, or affiliates to follow this policy can result in possible civil and criminal sanctions against the 5p- Society and its employees and possible disciplinary action against responsible individuals (up to and including termination of employment). Each employee has an obligation to contact the Chair of the Audit and Finance Committee, Executive Director or the Board President of a potential or actual litigation, external audit, investigation or similar proceeding involving the 5p- Society that may have an impact as well on the approved records retention schedule.
Most documents will be archived electronically with reasonable efforts to back up these archives. Giving records, federal and state tax & corporate documents will be retained at least as long as statutes require. Giving records will be archived in a similar fashion, however, while we normally use a 3rd party merchant processing service to avoid any contact with credit card numbers we occasionally process manual transactions in which case records or the transaction are retained but the credit card number is disposed of (deleted or shredded) as soon as practical and is not archived. The occasional credit card number sent by email may be inadvertently backed up as part of our email archives.
ONLINE DONATIONS & PAYMENTS, Including ACCEPTABLE USE POLICY
Compliance with PayPal’s Acceptable Use Policy when using their services for payment and donation processing are acknowledged herein by reference.
Donations and purchases are by rule not refundable, however, in the case of administrative error please contact us to request an adjustment or refund. Donations generally are tax deductible, your receipt and/or the context in which the donation was made will determine the deductibility. Purchases are usually partially deductible for the donation made in excess of the value of the item purchased and will be indicated as such on your receipt. Always check with your accountant or tax advisor for accurate advice.
Re-occurring/scheduled donations will generally not be scheduled for a period longer than 1 year, after which they must be renewed.
Donations and payments made by PayPal, Google, and Square are processed by 3rd parties. When using these 3rd parties, 5p- Society never sees, captures or stores your personal credit card or banking information.