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About the Five P- Society

Founded in 1986, we are the oldest and largest organization in the world dedicated entirely to families affected by 5p- Syndrome.

Our purpose

A mission built by families, for families

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

Founded in 1986, the Five P- Society is the oldest and largest organization in the world dedicated entirely to 5p- Syndrome (Cri du Chat). We provide information, education, and support to families, educators, and medical professionals touched by this rare chromosomal condition.

We connect newly diagnosed families with experienced ones. We bridge the gap between medical professionals and everyday caregivers. We show up at the conference, at the end of the phone, and in the pages of our Caregiver's Guide — because no family should navigate this alone.

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What drives us

Our core values

Compassion

We meet families where they are — in shock, in grief, in joy, and everywhere in between.

Knowledge

We provide evidence-based, family-tested information you can actually use.

Inclusion

We serve families across the US, Canada, and around the world — in English and Spanish.

Advocacy

We advocate for every individual's right to opportunity, dignity, and community.

Our story

40 years of advocacy

1986

The Society is Founded

A small group of parents of children with 5p- Syndrome come together to form the Five P- Society — the first organization of its kind in the world.

Early 1990s

First Annual Conference

Families gather for the first time at our annual conference, creating a tradition of in-person connection that continues to this day.

2000s

Regional Coordinator Network

We establish regional coordinators across the US and Canada, ensuring that newly diagnosed families can connect with an experienced family in their area.

2023

Caregiver's Guide Published

Over 100 families contribute their knowledge and experience to produce the most comprehensive 5p- Caregiver's Guide ever assembled.

2026

San Antonio Conference & Beyond

We gather in San Antonio, TX for our 2026 Annual Conference and continue growing our digital community, resources, and advocacy reach.

The people behind the mission

Leadership & Board

Our board is made up entirely of families and individuals who live the 5p- experience every day — parents, siblings, and advocates who bring both heart and expertise to everything we do.

Executive Committee
LC
Laura Castillo
Executive Director
Lakewood, CA
NW
Nick Wallace
President
Bellefontaine, OH
MM
Michelle Myatt
Vice President
Granite City, IL
GG
Gloria Griffin
Secretary
Louisville, KY
SB
Stefanie Batdorff
Treasurer
Fort Bragg, NC
Board Members
AA
Angel Arellano
Board Member
San Antonio, TX
AB
Angela Borek
Board Member
Dexter, OR
RB
Robert Brookman
Board Member
Crestwood, KY
CB
Christina Brown
Board Member
Mint Hill, NC
KF
Kristi Furnari
Board Member
Flagler Beach, FL
JG
Janie Guy
Board Member
Los Angeles, CA
BO
Becky Owens
Board Member
Lake Oswego, OR
AQ
Adam Querbach
Board Member
Austin, TX
JR
John "Hutch" Renk
Board Member
Menomonee Falls, WI
CT
Clara Thomsen
Board Member
Edmonton, AB, Canada
Medical & clinical expertise

Professional Advisory Board

Our Professional Advisory Board (PAB) is composed of volunteer medical professionals, researchers, and clinicians from across the United States who bring scientific expertise to our mission.

What the PAB Does

  • Oversees and evaluates research opportunities in 5p- Syndrome
  • Presents clinical findings and advances at annual conferences
  • Reviews and helps develop family-facing educational materials
  • Connects families with relevant clinical trial opportunities
  • Advises the board on medical and therapeutic best practices
Medical Professionals
Physicians, geneticists, and specialists in rare chromosomal conditions
Researchers
Scientists advancing our understanding of chromosome 5p deletion
Therapists & Clinicians
Speech, OT, PT, and behavioral specialists with 5p- experience

Are you a medical or therapeutic professional interested in joining our advisory board? Contact us to learn more.

How we serve

Our programs

From the moment of diagnosis through every stage of life, the Five P- Society offers programs designed to meet families where they are.

Family Support Services

Direct support for newly diagnosed families, one-on-one peer connections, and caregiver guidance at every stage.

Annual National Meetings

Our flagship yearly conference brings together families, medical professionals, and researchers from across North America.

Newsletters

Regular publications keeping families informed on the latest research, member stories, upcoming events, and resources.

Grandparent Support Services

Dedicated resources and connections for grandparents, who play a vital role in the lives of individuals with 5p-.

Reference Library

A curated collection of medical literature, family guides, therapy resources, and educational materials on 5p- Syndrome.

Ambassador Outreach Program

Member ambassadors spread awareness, support newly diagnosed families, and represent the Society in their local communities.

80/20 Raffle

Our signature fundraiser: 80% of proceeds go directly back to the winning family. Fun, fair, and community-driven.

Virtual 5K

Run, walk, or roll — our annual Virtual 5K lets families across the world participate and fundraise from anywhere.

Our impact in numbers

40+
Years of operation
1K+
Member families
30+
Annual conferences held
2 countries
US & Canada presence
Working together

Partner organizations

We collaborate with a network of organizations to maximize support for families and individuals with 5p- Syndrome.

Genetic Alliance

National coalition for genetic disorder families

NORD

National Organization for Rare Disorders

The Arc

Advocacy for developmental disabilities

SSA

Compassionate Allowance for Cri du Chat

Chromosome Deletion Outreach

Support for chromosome deletion families

Want to get involved?

Volunteer, donate, or become a member. Every contribution strengthens the community that families rely on.

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