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.

Mission Statement

To maximize quality of life for individuals with 5p- and their families.

Board Members

Executive Director

Laura Castillo
Lakewood, CA
director@fivepminus.org

Vice President

Michelle Myatt
Granite City, IL
michelle.myatt@yahoo.com

Treasurer

Stefanie Batdorff
Harker Heights, TX
s.batdorff@comcast.net

President

Nick Wallace
Bellefontaine, OH
wallacefamily04@earthlink.net

Secretary

Gloria Griffin
Louisville, KY
flyinggigi@icloud.com

Founder

Kent Nicholls
Cameron, MO
kentn@outlook.com

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Eileen Sherman
Skokie, IL
eilsher@sbcglobal.net

John “Hutch” Renk
Menomonee Falls, WI
hutchjpr@gmail.com

Dan Hoover
Frazeysburg, OH
danhoover@lcounty.com

Kristi Furnari
Flagler Beach, FL
kristi@lawfirmsuites.com

Jolene Towers
Beavercreek, OH
gnjtowers@aol.com

Becky Owens
Oswego, Oregon
becky.owens4@gmail.com

Krista Kells
Dorchester, Ontario Canada
kristakells@hotmail.com

Janie Guy
Los Angeles, CA
lovelyjane3210@gmail.com

Taimie Hoffman
Fayetteville, GA
taimie6@gmail.com

Melissa Sabin
Lenexa, KS
mel5p@outlook.com

Honorary Board Member

Christy Hammond
Ingersoll, Ontario, Canada
hammondeggs404@gmail.com

Honorary Board Member

Hayden Nanton
Trinidad & Tobago
nantonha@yahoo.com

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:

Donna Grasso
Havertown, Pennsylvania

Hillary Losen
Mukawonago, Wisconsin

Kelly Manteiga
Somerset, Massachusetts

Billy Masson
Sullivan, Missouri

Lori Passarelli
Costa Mesa, California

Jennifer Pasquale
St. Augustine, Florida

Mona Witman
Flanders, New Jersey

Research

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 director@fivepminus.org

All research projects are vetted by the Professional Advisory Board.  Please fill out the attached  5p- Research Proposal Format form if you would like to submit a future research project.

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  director@fivepminus.org.

Thanks and your participation is greatly appreciated!

Family History Registry Questionnaire

Fundraising

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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 director@fivepminus.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.)
  • Recycling
  • Garage Sales
  • Lemonade Stands

TAX-ID: 48-1022202

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 director@fivepminus.org

Shop to Give:

GoodSearch

Walmart Spark for Good – Go to Walmart.com, go into your account and go to Giving & Impact, you go to Preferred Charity and type in 5P Society, you can also put in our zip code of 90714.  We appreciate your adding us to your account.

iGive.com

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