Phase I/II readiness

Bringing Hope with CDKL5 Gene Therapy

Help us raise $3.5M to start life-changing trials for kids with CDKL5 Deficiency Disorder.

Every dollar brings us closer to helping children with CDKL5 reach new milestones. Join the movement!

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Latest Win: Pig Power for CDKL5!

Scientists at University of Missouri made a pig model to test our gene therapy. This milestone brings us one giant step closer to clinical trials!

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What is CDKL5 gene therapy?

CDKL5 Deficiency Disorder (CDD) is a rare condition (about 1 in 40,000 children) that can cause developmental delays and seizures when the CDKL5 gene is missing or not working properly.

Our solution: we use a special delivery system called AAV9—like a tiny ship—to bring a healthy CDKL5 gene to a child’s brain cells, helping them grow and stay healthy.

Why it matters: this could give kids with CDD a chance at a better life, bringing hope to thousands of waiting families. Early tests in mice show improvements in movement and thinking, and the approach is designed as a one-time treatment with lasting benefit.

Where we are: we’re in the research phase and planning human trials—your support can help

  • Targets the root cause by replacing the missing gene.
  • Designed for one-time dosing with durable benefit.
  • Builds on proven AAV9 platforms used in SMA and MLD.

Why is it promising

Fixes the Problem at Its Source: This therapy delivers a working CDKL5 gene to brain cells, helping them function properly and tackling the main cause of CDD, not just the symptoms like seizures or delays.

One-Time Treatment: It’s designed to be a single dose using a safe delivery system (AAV9), which could provide long-lasting benefits without needing repeated treatments.

Based on Proven Methods: It uses technology already successful in treating other rare diseases like SMA, making it more likely to be safe and effective.

Shows Great Results in Tests: Early studies in mice show better movement, thinking, and brain health, giving hope that it could help kids with CDD live better lives.

Moving Toward Human Trials: Research is progressing fast, with plans for testing in people soon—support can help make this happen!

Brings Real Hope: This could be a game-changer for kids with CDD, reducing seizures, improving development, and giving families a brighter future.

Take action now

Join our community — donate, host a local fundraiser, or volunteer. Every action helps move CDKL5 gene therapy closer to clinical trials.

How AAV9 Delivers Hope for Brain Health

AAV9 boat illustration CDKL5 AAV9 Vector → Brain Cells

AAV9 (Adeno-Associated Virus serotype 9) acts like a tiny delivery boat, carrying a healthy CDKL5 gene to brain cells. Once it reaches the neurons, this gene starts producing a protein that helps grow brain connections and keeps signals steady. This innovative approach offers hope for treating conditions linked to CDKL5 deficiencies, such as developmental and neurological challenges, paving the way for better lives.