TFE3 Foundation
TFE3 is an orphan condition—a diagnosis so rare that families are left to find their own way. With only 54 known cases, traditional research funding doesn't reach us. We have to build the path ourselves.
We are at a historic turning point. While TFE3 is rare, we live in the age of Gene Therapy. The technology to treat this exists; we just need the resources to unlock it. Your donation isn’t just help—it is the direct catalyst to help us turn "rare" into "hope." Join our mission and donate today to change the future for those 54 children, and counting.
Make a Direct Impact
When our daughter was diagnosed with TFE3 - Associated Neurodevelopmental Disorder at two years old, the doctor told us "She will never walk or talk." In those early days, we were handed two papers written about the condition and sent home. We felt like there was been a death in the family. Our future shattered like a mirror. We were scared, baffled, and completely alone. TFE3 was so rare that our daughter was only the 18th known case in the world.
A turning point wasn't a medical breakthrough, but a human one. We found a family in France, who led us to others. It felt like finding an island in the middle of a vast ocean. For the first time, we found people who understood what we were dealing with and a place to belong. Today, that "island" has become the TFE3 Foundation.
The doctors who gave us those initial "nevers" weren't being unkind—they just didn't know anything about TFE3. Today, at six years old, our daughter is proving them wrong. She is walking with support, and we have heard her approximate words, including the most important ones: "I love you." But the journey is still uphill. Like the other 54 children we now know of, she battles seizures, hypotonia, GI issues, and significant cognitive delays. She—and all children like her—deserves a chance at a life without these barriers.
How You Can Change the Story
We founded the TFE3 Foundation to ensure no parent ever hears that their child’s potential is "limited" simply because the research hasn't been funded yet. We are at a critical tipping point. There are now four labs worldwide working on mouse models to understand this condition. Your donation goes directly toward:
* Connecting the Dots: Bringing these global researchers together to share findings and accelerate a cure. We want to put on a convention where families, researchers and clinicians can meet face to face.
* Empowering Families: Providing the resources and community that we so desperately needed four years ago. Funding our website which is currently done out of pocket.
* Supporting Research: There are so many ways we can see doing this. Hiring research assistants dedicated to TFE3. Help further funding for our secure registry (which we've already created) that can help gather data and analyze options for drug repurposing. Developing best practices for managing symptoms; seizures, GI issues, education, etc. The issues that have a direct impact on daily life.
Imagine having a direct hand in helping a child finally hold their head up, or helping a child get off a g-tube and taste food for the first time without fear of choking. Will you join us?
100% of your tax-deductible donation goes toward our mission of finding a cure and supporting these incredible families. Because no one should have to do this alone.
Thank you for being part of our community and for believing in our children’s potential.
With gratitude,
Rainbow