We are experienced CDKL5 patient engagement advocates channeling over 25 years of caregiving and advocacy into powerful storytelling!

On our CDKL5 in Color podcast you'll hear our lessons learned along the way as parent caregivers to children living with CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. You’ll also hear voices from other members of the CDKL5 community sharing their experiences and insights.

We are passionate about:
- Fostering connection: Our podcast provides a space for families to hear about the experiences of others, which can be difficult to find organically in a rare disease community.

- Raising awareness: By sharing diverse community stories, our podcast increases awareness of the real-world challenges of living with CDKL5 Deficiency Disorder, such as navigating social systems and managing complex care.

- Encouraging participation: We are proud that our podcast serves as a touchpoint for the CDKL5 community. We’re not only helping families navigate life's challenges, we’re also informing them about advocacy and research opportunities.

- Providing patient-centered insight: By focusing on the lived experiences of caregivers and patients, our podcast helps researchers and pharmaceutical companies understand what matters to families.

Have a message you want to get out in front of the CDKL5 community? We can help!

CDKL5 in Color

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