12/03/2024
š Itās Giving Tuesday and Iām sure that youāve seen a million emails and social media posts reminding you. I know you have a lot of options for end of year donations but PLEASE consider giving in honor of Shreve and all of the other children who also face extraordinary challenges daily.
š§¬ CTNNB1 syndrome is a very rare genetic condition that affects brain development, leading to significant delays in mobility and communication. For Shreve and the other 430 people diagnosed in the world, this means struggles with the simplest of tasksāwalking, speaking, and connecting with the world around them. Imagine the frustration of wanting to express a thought, a feeling, or a need, but being unable to find the words. Picture a child yearning to run and play, but their little legs canāt yet carry them. That is what this syndrome does to our children.
š„¹ Each dollar donated goes directly to research to fund the cure for CTNNB1 syndrome. Your contributions will help fund groundbreaking clinical trials that could give my child, the ability to walk and talk. We dream of the day that Shreve takes her first independent steps. The day that we hear her say Ma-Ma or Da-Da. Your donations can help turn those dreams into reality.
š§¬ Both of the research teams (one U.S. based and one E.U. based) are so incredibly close to a cure. The Slovenia team is months away from phase one of a gene therapy trial and the U.S. is 1-2.5 years away from hopefully phase 1. The mice in BOTH projects are having incredible results. The beta catenin (CTNNB1) protein is being corrected to appropriate levels and stopping damage from the administration of the gene therapy moving forward. The mice in the small molecule pharmaceutical approach project are actually REVERSING the damage. This news is extremely hopeful and we are praying that both of the projects are successful.
š«¶š»Every dollar donated is a step toward creating a brighter future for Shreve and all of the other dragonflies. Thank you from the bottom of the McWilliamsā and our hearts!
š: https://givebutter.com/dragonfly/shrevemcwilliams1
