Registration deadline approaching for Family Conference

The 2022 Kleefstra Syndrome Family Conference is a bit later this summer, but the May 15 registration deadline is quickly approaching.

The conference will be held from June 23-25 at the DoubleTree Hotel in Naperville, Ill. (about 20 miles SW of Chicago O’Hare Airport). The conference will focus on practical education and tips for families raising children and adults with KS.

Zoë Frazier and Dr. Tamar Katz from the Kleefstra Clinic at Boston Children’s Hospital will be attending in person, while Dr. Siddharth Srivastava from the Kleefstra Clinic will join us virtually, and Dr. Karlijn Vermeulen of Radboud University Medical Center’s Department of Human Genetics will be presenting a virtual keynote address on regression.

The topics to be covered in the different breakout sessions are:

• Navigating Government Programs
• Financial Supports for Adults with Disabilities
• Integrating Therapy into the Home
• Family Dynamics + Communication with One Another
• Post-High School Housing + Activities
• Financial Supports for Adults with Disabilities
• Navigating Government Programs
• Self-Care for Parents + Keeping a Strong Relationship
• ABA Therapies
• Sports + Recreation for Individuals with Special Needs
• Transitioning to Adulthood
• Individualized Educational Plan’s (IEP) + Working with School Administration

The theme of the conference is “Living in Holland” – a twist on the poem Welcome to Holland by Emily Perl Kingsley.

We are incredibly excited to bring our Kleefstra Syndrome Community together to learn, connect, and bond with one another. We are stronger together, and we look forward to connecting to strengthen our ties with one another while unlocking the potential for our loved ones with Kleefstra Syndrome.

Please book your lodging accommodations under the room block for the Kleefstra Syndrome Family Conference. If would like to volunteer to help with the conference, please e-mail unlock@idefine.org.