IDefine

There are so many stories from the broader community that remind us exactly why advocacy work is so important. This is one of them.

Nicole Johnson, co-founder of the FOXG1 Research Foundation, joined the Global Genes podcast to share the story of how she helped build an organization dedicated to advancing treatments for FOXG1 syndrome, an ultra-rare neurodevelopmental condition with no approved disease-modifying therapies.

This story is the same spirit that drives everything we do at IDefine for the (KS) community. We are so grateful to have peers like the FOXG1 Research Foundation who are paving the way and showing families everywhere what is possible when a community comes together around a shared purpose.

Give the episode a listen here:

How Parents Took Development of a Gene Therapy into Their Own Hands Nicole Johnson and Nasha Fitter, co-founders of the FOXG1 Research Foundation, discuss how a parent-driven foundation became a virtual biotech capable of advancing a gene therapy into human clinical trials, how they prioritized translational work over academic projects that don’t move a therapy to...

Our KS families include some of the most resourceful, determined caregivers out there, and you shouldn’t have to spend hours digging through records just to find answers.

That’s why we’re excited about Citizen Health's AI Advocate. It lets you upload your loved one’s medical records and ask questions in plain language, whether you’re preparing for an appointment, navigating an insurance appeal, or trying to track down medication history. What used to take hours can now take seconds.

We are partnering with Citizen Health to make sure the KS community is represented as this tool evolves. The more families who use it, the more we can help shape features that truly reflect our needs. Sign up for free at https://www.citizen.health/ai-advocate/kleefstra-syndrome

Only one week to go 💜 The countdown is on for the Benefit Concert!

On Friday, May 22, the Kalama Brothers will take the stage at the University of Redlands Memorial Chapel for a powerful night of live music, community, and impact. Every ticket purchased will support critical research into potential treatments for (KS), a rare genetic neurodevelopmental disorder.

Whether you join us in person or via livestream, you’ll be helping to bring hope to families across the KS community while being part of an unforgettable evening. Get your tickets today: GiveButter.com/LoveConcert