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.
Our mission is to improve the lives of individuals with CAMK2 mutation disorders by supporting clinical research aimed at developing pharmacologic treatment for symptoms and gene therapies for cure.
Our family-led research network has been affiliated with the ENCORE CAMK2 Center of Expertise at the Erasmus Medical Center in Rotterdam, Netherlands, since 2018. Already world-renowned for its work with another neurodevelopmental disorder, Angelman syndrome, the ENCORE program is well-situated to tackle CAMK2.
We’re now working to expand CAMK2 expertise by creating international satellites in California and Texas, where several of our scientific board practice medicine.
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.
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.