Our Mission

Empowering families. Accelerating genetic breakthroughs.
We drive innovative research to develop therapies that transform the lives and independence of everyone affected by 5p- syndrome.

Our Story

In 2014, Megan and JC Leston received life-changing news: their son had been diagnosed with Cri du Chat (5p- syndrome), a rare genetic disorder with a daunting prognosis. Determined to create hope and a better future-not just for their child, but for families everywhere-they founded the Cri du Chat Research Foundation (CDCRF).

What began as a personal journey quickly became a movement. CDCRF is a volunteer-powered nonprofit dedicated to advancing science and supporting families. We focus on funding translational research, building expert networks, and accelerating the development of real treatments for 5p- syndrome.

A person holding a sleeping newborn baby wrapped in a blanket.

Why We Exist

Every year, 50 to 60 children in the U.S. are born with 5p- syndrome. Historically, families faced limited options and little hope. Today, advances in genetic science offer new possibilities, but progress depends on collaboration, funding, and community involvement.

Our work aims to change the trajectory for everyone with 5p- syndrome-improving lives, fostering independence, and fueling discoveries that may also benefit related conditions like autism, Alzheimer’s, and schizophrenia.

What We Do

  • Fund Research: Directing every dollar to promising projects that move us closer to effective therapies.

  • Build Community: Connecting families, clinicians, and scientists to share knowledge and support.

  • Raise Awareness: Spreading the word about 5p- syndrome and the urgent need for research.

  • Inspire Action: Creating opportunities for families, volunteers, and donors to make a real impact.

Board of Directors

  • Megan Leston

    PRESIDENT

  • JC Leston

    VICE PRESIDENT

  • Joseph J. Leston

    SECRETARY

  • Bridget Maloney

    MEMBER AT LARGE

  • Nicholas Elefterakis

    MEMBER AT LARGE

  • Sofia Sokolov

    BOARD MEMBER

Our Partners

CDCRF collaborates with leading organizations, research institutions, and advocacy groups to advance 5p- syndrome research and support families worldwide. These partnerships enable us to leverage collective expertise, share resources, and accelerate progress toward treatments and therapies for our community.

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Citizen Health

CDCRF is partnering with Citizen Health to launch a 5p- syndrome Digital Natural History Study to accelerate 5p- syndrome research, prepare for clinical trials, and support families in their care journey.

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Autism BrainNet

Autism BrainNet promotes innovative, high-quality research on postmortem brain tissue with the goal of improving the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions.

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JumpStart Program

The JumpStart Program works to establish and progress research agendas in emerging and neglected rare diseases. The program works closely with patient groups and foundations, pharma and biotech, and the academic community to drive therapeutic development for rare diseases.

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Global Genes

Global Gene's purpose is to connect, empower, and inspire the rare disease community. CDCRF is grateful for their leadership in advancing rare disease advocacy and support.

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AGENDA

The mission of AGENDA (Alliance for Genetic Etiologies of Neurodevelopmental Disorders and Autism) is to improve outcomes of individuals with all forms of autism by fostering a genetics-first approach to autism research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with autism.

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Simons Searchlight

Simons Searchlight is an initiative of SFARI that aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder.

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Rare Epilepsy Network (REN)

The Rare Epilepsy Network (REN) is a partnership between rare epilepsy organizations, the Epilepsy Foundation, Columbia University, and Research Triangle International to conduct research to improve outcomes of rare conditions associated with epilepsy and seizures.

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CombinedBrain

The CombinedBrain mission is to identify and discuss biomarkers and outcome measures for rare brain disorders, with a specific focus on non-verbal neurodevelopmental disorders.

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Genetic Alliance

Genetic Alliance is the world's leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.