Every Child Deserves a Chance to Flourish!

If it were your child, you would want answers.

When Yvonne and Wim’s son, Toby, was diagnosed with Kleefstra syndrome (KS) at just five months old, their first year was marked by hospital visits and overwhelming uncertainty. Today, thanks to early intervention and continuous care, Toby is walking, talking, and building skills. But for Toby and hundreds of families like his, a diagnosis is only the beginning. The biggest questions remain:

What therapies can unlock a child’s full potential?
How do we prevent regression?
And can we find treatments that transform their future and help them
flourish?

IDefine was founded by parents who refused to accept that "rare" means overlooked. Today, we are accelerating research to bridge the gap between understanding Kleefstra syndrome and actively treating it:

• building critical research tools,
• supporting innovative clinicians,
• expanding patient and caregiver resources, and
• advancing work towards targeted therapies.

Because KS shares genetic pathways with other neurodevelopmental conditions, the breakthroughs we fund today for Kleefstra syndrome have the power to inform treatments far beyond a single rare disease.

Science is moving fast, but research requires critical funding to reach the finish line. Your year-end investment brings scientists, clinicians, and data together around a single mission: driving promising medical discoveries out of the lab and into the lives of the children who need them now.

Before December 31, please make a tax-deductible year-end gift to IDefine. You would want someone fighting for your child—be the reason science keeps moving forward for ours.

With gratitude,

Geoff Rhyne
CEO, IDefine
Ella’s Dad

P.S. Your year-end support turns rare diagnoses into real, effective treatments. Please consider making your most generous gift today for Toby, for Ella, and for every family waiting for answers.