Read about this incredible CTNNB1 family who is making a difference and raising money for research for their daughter Savannah and so many other children just like her. We have all walked down this winding path to a diagnosis in a very similar way. The hope is one day instead of being told “your child has a rare de novo genetic disorder and here is an outdated paper about it,” parents will instead receive the news “your child has this disorder but here are the options to treat it.” Research for a treatment and a cure combined with love and therapies has the ability to change the future for our patient population. Thank you to Savannah and her family for helping move CTNNB1 research forward.
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