2024 North American Kleefstra Syndrome Family Conference

We look forward to gathering in Boston this summer with all of our Kleefstra Syndrome community to hear from key note speakers, learn the latest from our doctors and specialist, engage in meaningful conversations with families and give our children time with one another to explore and create memories for a lifetime.

The conference will be held from June 20 - June 23 at the Embassy Suites by Hilton Boston Waltham (about 20 miles NW of Boston Logan International airport). We have a negotiated rate of $159/night that includes breakfast in the restaurant. This rate is effective from June 17 - June 26. Please note that there is also $15/day parking fee.

Please register to indicate your interest in attending this conference. Doing so allows us to best communicate with the venue regarding preparations. We are offering Early Bird Registration for both Adults ($75 instead of $99) and Children ($25 instead of $49). Early Bird Registration ends March 20th, 2024. We are providing KidCare during the morning and early afternoon both Friday and Saturday. This will be a requirement for all participants with KS and siblings under age 15.

We are appreciative of the support of some members of our community who have created a financial sponsorship for families who would otherwise not be able to attend the conference or would face significant financial hardship to attend the conference. If you are seeking financial assistance, please reach out to us at unlock@idefine.org with an explanation on your need and desire to attend the conference, what you hope to achieve by attending, how many people you are seeking support for, and if you would be willing to volunteer at the conference or in the future.

We are happy to announce the speakers in attendance that will be joining us at the conference

2024 North American Kleefstra Syndrome Family Conference Schedule (subject to change)

June 20 - Thursday - Welcome Dinner and Reception

• 4:00 – 8:00 Conference Registration
• 5:30 – 6:00 Newly Diagnosed Family Orientation
  • Welcome reception for families new to our KS community! If this is your first KS summit, or someone in your family has been diagnosed within the past two years, please join us for a brief conference orientation and Q&A! This session will provide guidance on how to get the most out of the conference, give you a chance to meet other parents and caregivers and include informal discussion of parenting/caring for someone with KS. Individuals with KS should not attend this brief meeting.
• 6:00 - 9:00 Kickoff Reception/Family Meet + Mingle

June 21 - Friday - Workshops and Presentations from Doctors and Specialists

• Breakfast/Late Check in/KidCare Check-in
• Morning Session
  • Welcome to the 2024 North American KS Family Conference!
  • Eric Scheeff, PhD: The Community in Research/Updates
  • Dr. Tjitske Kleefstra
  • Dr. Siddharth Srivastava
  • Kristen Connors: Disease Concept Model
• Lunch
• Afternoon Session
  • Sleep and Regression Panel Discussion
  • Group Photo and Special Music Event with Lindsay Munroe
  • Dinner Reception
  • Family Meet + Mingle

June 22 - Saturday - Workshops and Presentations:

• Breakfast/KidCare Check-in
• Morning Session
  • Financial Planning with Mary Anne Ehlert
  • G/I in Kleefstra syndrome and Neurodevelopmental Disorders with Dr. William E. Bennett
• Lunch
• Afternoon Session
  • Panel: Living as an Adult with KS
  • Kleefstra Syndrome Success Stories
  • Stroll the Caregiver Village
  • Special Family Event with Musical Ventriloquist Kevin Driscoll
  • Reception/Wrap
  • Dinner