CDKL5 in Color

Episode 39: Let’s Just Chat!


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Episode 39: Let’s Just Chat!

Sometimes it’s good just to chat. In this latest episode, we talk about what’s been on our minds of late. We talk about the ongoing challenges we face with home nursing and respite, how the upcoming federal budget for 2027 may impact our families and what we can do to advocate, and we talk MEGA COLON - it’s a variety! Have a listen!

SHOW NOTES

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Email us to be on the show! [email protected]

Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!

LINKS:

Colorado Consumer-Directed Attendant Support Services (CDASS)

Council of Parent Attorneys and Advocates

IDEA - Individuals with Disabilities Education Act

The Arc: Education Policy and Advocacy

Find Your Representatives in Congress

Waivers: HCBS Home & Community-Based Services 1915(c)

Kids’ Waivers - state by state list

Cleveland Clinic: Peristalsis

Cleveland Clinic: Bisacodyl

DEE-P Webinar: Navigating GI Interventions

Cleveland Clinic: Intussusception


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CDKL5 in ColorBy Marissa Bishop