Some of you are aware that our three-year-old daughter, Wynne, was recently diagnosed with Kleefstra Syndrome, a rare genetic disorder with approximately 500 known cases globally.
Everyone who meets Wynne is immediately drawn in by her double dimples and magnetic smile. She is an extremely happy girl who idolizes her big sister, Josie, and has never met a stranger.
Wynne has faced many challenges. She has been in various therapies since shortly after she was born. She is the most determined person we know. Every milestone has been the result of hard work and a team of amazing people working with her and cheering her on. Wynne has made phenomenal progress. We are so proud of her, however we want more. We want a cure.
We have been extremely fortunate to find a group of parents who share our passion to find a cure. That's why we are working with and supporting IDefine, a United States-based charity organization developed in 2020, intent on finding a cure for Kleefstra Syndrome.
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!
The great news is IDefine is already making substantial progress on all of these fronts. Of course, all of these focus areas require funding, so we are asking our friends and family to consider making a donation to support Wynne, and our efforts.
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 IDefine for more information about our Charitable Foundation.
And please visit Kleefstra Syndrome for more information about this genetic disorder.
Thank you for your support!
Matt, Maria, Josie and Wynne