About
My lovely Amelia is my heart and soul! She such a sweet and sassy girl. Some of her favorite things are bubbles, dancing/music, soccer, pretzels and swimming. She loves her family so much! In every cell in her little body, a rare mutation causes the amount of a single protein(ARID1B) to be only half of what it should be. This mutation affects her life - speech, communication, learning, understanding and motor skills - and creates huge barriers on her way to living an independent life. Technologies that can correct Amelia's genetic impact already show enormous potential in other syndromes. They may immeasurable improve life and allow her to realize so many more if her futures dreams. These technologies require adaptations and experimentations to prove their capability for Amelia's gene. It is an expensive endeavor. We have already taken the first steps - identifying the appropriate modalities, finding the right researchers and financing the initial stages of development. Now we are turning to you for help to take this forward and quickly create treatment for Amelia and thousands of children with the same syndrome. We know that Amelia can move mountains, and we would love nothing more than to help her do just that. The simple truth is we cannot take this journey alone. Your support in this endeavor is greatly appreciated.
