Friends & Family -
For Kleefstra Syndrome Awareness Day (9/17/20) and Quint’s birthday this year (11/7/20) we are honored to share details with you regarding our fundraising goal to help kickstart a US based Kleefstra Clinic!
As you may know, our five-year-old son Quint was diagnosed in 2015 with Kleefstra Syndrome (KS), a rare genetic disorder with approximately 500 diagnosed cases globally. KS causes intellectual and physical disabilities, affecting vital organs, learning and motor skills.
We are so excited to be uniting with IDefine, a US-Based Charity organization established in 2020, intent on finding a cure for KS. The 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.
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. The first of which being the establishment of the first ever clinic specifically focused on Kleefstra Syndrome! To understand the potential 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!
Please visit www.idefine.org for more information about this Charitable Foundation.
Thank you for your support!
Quint, Jessie, Chris, Ashley & Jacob