Our first episode is live! Wahoo!
There is definitely a bit of a learning curve to this podcasting thing, but now that we have our first recording under our belt I know it will just get better and better from here! In this episode we talk about why we started this podcast and why rare disease storytelling matters. I hope you’ll tune in and let us know what you think!
Why start a CDKL5 podcast?
CDKL5 in Color is a passion project that stems from us wanting to do more to amplify CDKL5 and to connect with other diagnosed families who might be looking for support out in the world of podcasts. Like other rare diseases, you’re not going to just bump into someone in the store who knows CDKL5 or find people by chance. You really need to seek out members of this CDKL5 community for that connection. We hope our podcast provides an avenue to do that.
Why is storytelling important for advocacy?
The heart of why we advocate is because we need things to change. But how do people help you when they don’t understand what you need help with? Most people simply don't understand what people living with CDD and their caregivers are facing day in and day out.
If you can’t effectively help someone understand the good and the bad of your daily life, it’s really hard for them to help you in a meaningful way.
Thinking about your audience matters when telling your story. Who are they and what do you want them to get out of listening to you. Storytelling could be for connection, like with another diagnosed family, or it could be to advocate for change or motivate a call to action of some kind.
“Storytelling is probably the most effective thing we can do as advocates that actually produces something tangible that makes life better.” - Amanda
Listen to this episode on Spotify or Apple Podcasts and let us know what you think!
Until next time 💚
Like this blog? Tell your friends!
Be sure to check out our podcast and follow us on social media!
@CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube
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.
Comments
Post a Comment