Friends & Family -
On this Kleefstra Syndrome Awareness Day, 9/17/20, we are honored to share details with you regarding our upcoming fundrasing event!
As you may know, our seven-year-old daughter Brianna was diagnosed with a rare genetic disorder called Kleefstra syndrome (KS) in 2018. KS causes intellectual and physical disabilities, affecting vital organs, learning and motor skills.
Since the diagnosis, we have made finding a cure for KS part of our life's mission. Like many rare disorders, research into treatment is underfunded and overlooked by most clinical research organizations. So with several other KS parents, we launched www.IDefine.org to bring together leading scientists and institutions to accelerate new treatments.
We feel very positive about Brianna's future, and we want to do everything we can to help her live her best life.
Please join us by participating or donating to our Kleefstra Syndrome Walk on October 11th, 2020 at 10:00am. This will be a stroll around beautiful Lake Lenexa @ Black Hoof Park.
Please consider registering for the Walk, or donating if you are unable to join us in person. Any amount is so very helpful to this cause that is so near and dear to our hearts.
All proceeds will be routed through our fiscal sponsor, Player's Philanthropy Fund. 100% of your contributions will go towards establishing the very first KS Center of Excellence at Boston Children's Hospital. This COE will provide much needed care and treatment for many KS families who have not had access previously.
Please visit www.idefine.org for more information about our Charitable Foundation.
Thank you for your support!
**Please note - due to COVID, we will encourage masks and social distancing at this outdoor event. If you are not comfortable participating in person, please consider making a donation and taking a walk on your own that day in honor of those with Kleefstra Syndrome**