On February 26th, 2019, we learned that our baby girl, Ella Marie, was diagnosed with Kleefstra Syndrome. In that moment where emotions flew high, we set out on a new course. A course of struggle, yes, but also, a course full of opportunity.
Team Ella is about breaking down barriers and maximizing our potential. We choose to "be the change we wish to see in the world." In moments of heartbreak, concern, and doubt, we want to be that hope. We want to help define a new future.
Along with several other families, we launched IDefine, a US-based organization, in September of 2020. We are intent on accelerating lfe changing treatments, and ultimately, cures, for rare genetic disorders resulting in intellectual disabilities. Our initial focus is on Kleefstra Syndrome as it is a great model syndrome that will uliitmately seek to inform many other syndromes. We are stronger together!
Our organization has three areas of focus: establishing a Kleefstra Syndrome Center of Excellence at Boston Children's Hospital, funding scientific research and development, and building a network for community outreach and support. We have ambitious goals at IDefine, and we will not stop until we find a cure!
Our first campaign, Kickstart the Kleefstra Clinic, seeks to raise $75k before the end of 2020. The monies raised will go directly to the establishment of the first ever clinic specifically focused on Kleefstra Syndrome! To understand the potenntial impact of a donation, $100 will essentially provide a 1 hour session for one of our children. For so many of our parents, having their child be seen by someone who is an expert on Kleefstra Syndrome was impossible. With your help, we can make that a reality!
All proceeds from this fundraising campaign will be routed through our Fiscal Sponsor (Player's Philanthropy Fund) and allocated directly to IDefine in support of defined Kleefstra research projects.
Please visit www.idefine.org for more information about our Charitable Foundation.
Thank you for your support!
Love to you all, be well,
Kelly, Geoff, Jackson, Griffin, and our guiding light, Ella Marie