Our focus is family
Making connections, sharing stories, and improving life for our children affected by CAMK2 mutations
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CAMK2 Therapeutics Network is a family-led, scientifically supported international collaboration working to improve the lives of individuals with CAMK2 genetic mutations.
The rare gene mutations result in severe neurodevelopmental disorders that affect our loved ones and pose extreme challenges for family life.
We aim to nurture a strong CAMK2 community and, in partnership with our medical and scientific colleagues, to work toward developing near-term treatments by repurposing medications. Our long-term goal is to use precision genetics to develop a cure.
CAMK2 Therapeutics Network is a patient-led collaborative research network whose mission is to serve the community by
(1) educating families, physicians and scientists about CAMK2 gene-related disease;
(2) facilitating universal access to diagnosis, participation in research and expert clinical care for all affected individuals; and
(3) building partnerships to fast track innovative treatments and cures. To improve the lives of patients and families, we are relentlessly pursuing symptom relief for every affected individual.
Parent led, professionally advised
The members of CAMK2 Therapeutics Network’s Parent Board, such as founding member Neville Ross and family, at left, are the face of the condition, providing hope and critical information to other families living with CAMK2. Just as important, the parents give urgency and real-life meaning to the work of researchers and health practitioners.
Our scientific team of world-class experts create clinically relevant, feasible research goals. They are supported by other scientist and physician collaborators whose international, professional networks help recruit the best talent for finding effective treatment and a cure.
Strength in numbers, strength in our connections. We exist to bring hope and knowledge to families, and to advocate for research, diagnostics and precision medicine treatment and therapies.
For Medical Professionals
Neurodevelopmental disorders associated with CAMK2 mutations have only been identified since 2017. Our site includes up-to-date information on what is known about these mutations and how they cause disease. We encourage you to reach out to the CAMK2 ENCORE team and our other clinical experts to discuss potential treatments. Your care and participation gives us hope.
A representive sampling of CAMK2 case distribution
Diagnosis of CAMK2 was first made in 2017, and existing cases are currently clustered near major medical and research centers. Cases are expected to increase in number and geographic diversity as diagnostic testing becomes more widely available.