Your Support Matters

For many of us, CAMK2 was not a word we knew—until it changed our lives.

For years, we watched our children struggle with seizures, developmental delays, and behaviors no one could fully explain. We went from specialist to specialist, test to test, hoping for answers. Most of the time, we were told to wait, or that our child’s symptoms didn’t fit any known diagnosis. We lived with uncertainty, fear, and the quiet worry that we were running out of time.

In 2017, everything changed.

Scientists identified mutations in CAMK2 genes as the cause of a newly recognized neurodevelopmental disorder. For the first time, families like ours were given a name for what we had been seeing in our children all along. Three of our children were among the first 16 identified worldwide.

That diagnosis brought relief—but it also brought new questions.
What does this mean for our child’s future?
Are there treatments?
Will anyone study this rare condition?

Rather than wait for answers, parents came together.

We found one another across countries and continents. We partnered with researchers. We organized the first global CAMK2 gathering. And we built the CAMK2 Therapeutics Network—a family-led effort to ensure that no child with CAMK2 is ever invisible again.

Today, around 350 children, teens, and adults worldwide have been identified with CAMK2 mutations. We know there are many more—children and adults who remain undiagnosed, families who are still searching for answers. As genetic testing becomes more common, those numbers will grow. CAMK2 does not discriminate by geography, ethnicity, or background. It can affect any family.

And yet, because this condition is rare, research does not move forward on its own.

Progress depends on community.
Progress depends on advocacy.
Progress depends on people like you.

Your support fuels the research that helps scientists understand how CAMK2 mutations affect the brain. It helps bring families and clinicians together to share knowledge and data. It helps lay the groundwork for future treatments—so families are not left waiting another decade for hope.

We are parents, caregivers, and loved ones doing everything we can for our children. With your help, we can turn uncertainty into understanding, isolation into connection, and science into solutions.

Please consider donating today. Your generosity brings us one step closer to answers—and one step closer to a better future for families living with CAMK2.

2026 CAMK2 Research Fund

Countdown to Cure CAMK2 Disorders

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