Family and Friends,
As some of you know, our seven-year-old daughter Adelind was diagnosed with a rare genetic disorder called Kleefstra syndrome (KS) in 2017. KS causes intellectual and physical disabilities, affecting vital organs, learning and motor skills.
Since the diagnosis, I have made finding a cure for KS part of my life's mission. Like many rare diseases, research into treatment is underfunded and overlooked by pharmaceutical companies. So with several other KS parents, I launched IDefine to bring together leading scientists and institutions to accelerate new treatments.
We feel very positive about Adelind's future, and we want to do everything we can to help her live her best life. With that in mind, my family is launching a fundraiser to help us reach the next phase of treatment research. Thanks for your help to reach this goal and spread awareness of KS!
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 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 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!