A Message from Immedica: Reflections from Our First IFCR Family Conference | International Foundation for CDKL5 Research

Last month, our Immedica team attended our first CDKL5 Family Educational Conference outside Philadelphia – and we’re still finding the words for what it meant to us.

From the moment we walked into Thursday’s focus group, we felt it: this community leads with open arms, even through no hot water, no air conditioning, and firetrucks showing up. Families carrying some of the heaviest caregiving journeys still made time for us to talk, to share, to trust us with what matters most. We don’t take that lightly.

Over the next two days, we sat in on sessions on clinical care, gene therapy, nutrition, sleep, and caregiver wellbeing, and learned from the ICCRN physician panel. But truthfully, the most meaningful moments happened in hallways and over lunch, hearing what life with CDKL5 deficiency disorder really looks like – the good days, the hard days, all of it.

To every family who welcomed us in: thank you. You didn’t have to make space for us, and you did anyway. We came to learn and left moved by your strength and generosity. We’re honored to walk alongside you, and already looking forward to the next one. Please reach out to me if I or our team can ever be of any support in your journey.

With gratitude,

Tom
Sr. Director of Patient Services & Advocacy
Tom.Damato@Immedica.com
On behalf of Immedica Pharma US Team