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Lauren Fasolo

Team Ella! / CHD2 Awareness Day 2024

"To raise funds for research in support of treatment and a cure for all those affected with CHD2 related disorders."

  • $1,594

    Raised

  • $6,000

    Goal

  • 12

    Supporters

  • 0

    Days Remaining

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About

At age 6, Ella was diagnosed with a rare form of epilepsy called Jeavon’s Syndrome, and ever since then we have been on a journey to find the right treatment and a hopefully an outright cure. In 2019, we learned through a comprehensive genetic panel that she had a de novo (non-genetic) mutation in her CHD2 gene causing her epilepsy and other disabilities, and that it was only just recently identified condition without a lot of available information about it yet. The diagnosis led us to a patient and caregiver community, and in 2020 via those connections a group of highly dedicated parents and supporters joined together to form the non-profit organization Coalition to Cure CHD2 (CCC). Mike currently serves on the board of CCC, and we are pleased to share that the organization accomplished much in its first three years. Key updates since last year’s awareness day include advancement of several research engagements, our first ever family & research conference, and the arrival of a dedicated executive director to help accelerate even more that the organization accomplish with your generous donations. Through it all, CCC’s mission remains to improve the lives of those affected by CHD2-related disorders by funding research necessary for finding a cure. With your generous donation, please know that unequivocally, CCC and its board of directors will use your kind donation wisely and with the purpose of ultimately improving lives through treatments and progress to our end goal: A CURE! Thank you so much, Lauren & Mike