Marissa recieved her diagnosis of Kleefstra syndrome a little over a year ago. She was three months old. We are so lucky she is medically healthy, as so many of her KS Siblings are medically complex. However Marissa does suffer with developmental delays with her gross motor skills such as standing, walking etc, and speech. Having a center that specializes in her disorder and finding a treatment or cure has become our lifes mission. I am so happy to find a group of parents who came together with this mission to make miracles happen for our babies! Please donate to help this dream become a reality and find a treatment or better yet maybe even a cure for my amazing baby girl 💜💜
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!