Hello! So glad you’re here!
I’m Marissa, co-host of the CDKL5 in Color podcast (with my CDKL5 partner-in-crime, Amanda) and content creator for all things CDKL5 in Color. Chances are you found us because someone you love has a diagnosis of CDKL5 deficiency disorder. But maybe you are facing a different rare epilepsy that has symptoms in common with CDKL5. Or perhaps you work in rare disease in some way.
However you found us, welcome!
CDKL5 in Color is truly a passion project that has been in the works for a while now, and we are so excited to finally see it come to life! On the podcast you’ll hear Amanda and me share lessons learned along the way as parent caregivers to children living with CDKL5 deficiency disorder in a variety of topic-based candid chats. You’ll also get to know members of our CDKL5 community through interview episodes that are sure to leave you feeling informed, inspired, and connected.
We are channeling over 25 years of CDKL5 caregiving and advocacy into powerful storytelling.
Together, Amanda and I have spent over a quarter of a century caring for our children and engaging in advocacy efforts for CDKL5. We are now using those experiences to create compelling narratives that we hope will resonate with our audience and even help drive change.
Is there a topic you’d especially like to hear us chat about? Let us know!
The podcast trailer is out now!
Listen on Spotify or Apple Podcasts and let us know what you think!
Until next time 💚
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Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.
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