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A Bit About Us

Nora's Story

In the months following the birth of our daughter Nora, we were living every parent's nightmare - discovering that our daughter's seizures were caused by a rare genetic disorder that would likely lead to lifelong delays and multiple disabilities. A disorder so rare that leading scientists can't pinpoint the gene responsible. A disorder so rare that there was no treatment, no cure, nothing we could do except "take her home and love her as she is".

 

So what happens when you're told there is nothing possible left to do for your child? You try the impossible.

 

We have an opportunity to work with a team of fantastic scientists and pioneer medicine entrepreneurs that could lead to BOTH a definitive diagnosis and opportunities for treatments (or a CURE) for Nora and other kids fighting big battles just like hers.

The best part is that advancing research for one rare disease paves the way for future discoveries. We dream of a world where no parent will ever have to be told "There's nothing more we can do for your child".  A world where parents feel empowered and educated to find answers and treatments for their children.

 

Please consider donating to help us find a diagnosis and treatment for our girl.

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