Jack was diagnosed with Kleefstra Syndrome in April 2019, just a few months before he turned 2. It was a relief in a way to finally have a reason as to why he needed his little heart to be fixed at 10 months, why he needed a huge team of therapists to help him work toward developmental milestone goals, and why he had a list of medical specialists we needed to see. Then it became much more real when we were given a stack of paperwork from the geneticist giving us information about a rare syndrome that not many people know about or how to treat.
We have met some amazing families because of Kleefstra and I'm so excited about Jack's future because of some incredible organizations that have been put in place to help kids like Jack!
100% of your donation goes directly to building a Kleefstra Clinic at Boston Children's Hospital! This is huge because it will be the first center in the US dedicated to helping kids with Kleefstra! We look foward to visiting it once it opens so we can meet the amazing team of specialists!
IDefine is a US-Based Charity organization developed in 2020, intent on finding a cure for Kleefstra Syndrome, a rare genetic syndrome with approximately 500 diagnosed cases globally.
Our organization has three areas of focus: establishing a Kleefstra Syndrome Center of Excellence @ Boston Children's Hospital, funding scientific research and development, and building a network for community outreach and support. We have ambitious goals @ IDefine and will not stop until we find a cure!
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!