Early bird registration open for Family Conference, agenda available

We are excited to announce that registration for the 2024 North American Kleefstra Syndrome Family Conference June 20-22, 2024 at the Embassy Suites by Hilton Boston Waltham in Massachusetts is now open. The conference agenda is firming up and includes a mix of learning, fun and opportunities for KS families to connect.

“We appreciate the community’s feedback on what topics they are interested in hearing about and we have an agenda that reflects that,” said IDefine CEO Geoff Rhyne. “While the conference is a great opportunity to hear directly from the world’s foremost KS experts, we were also mindful to create space for connection and fellowship.”

Attendees are encouraged to register by March 20 to take advantage of Early Bird pricing of $25 for children ages 5-17 and $75 for adults. After then, prices will be $49 for children ages 5-17 and $99 for adults until registration closes on May 31. Children under 5-years-old are free. Registration fees will help offset costs of the conference and include five meals and childcare during conference sessions. Families who would otherwise not be able to attend the conference or would face significant financial hardship to attend the conference are invited to request support by emailing unlock@idefine.org.

A new offering this year is a Newly Diagnosed Family Orientation to give families who received their diagnosis within the last two years an opportunity to meet experienced members of the KS community and ask questions. The session is for caregivers only (childcare will be provided) and will include discussion about parenting and caring for a child with KS.

Conference highlights include talks by:

• Professor Tjitske Kleefstra, for whom KS is eponymously named and head of the Department of Genetics at Erasmus Medical Center.
• Dr. Siddharth Srivastava (Dr. Sid) from the Kleefstra Syndrome Clinic at Boston Children’s Hospital who will provide updates on the clinic, ongoing research and future opportunities.
• Dr. William E. Bennett, a member of the Consortium for Autism, Neurodevelopmental Disorders & Digestive Diseases (CANDID) and an associate professor of pediatrics and a pediatric gastroenterologist, clinical informatician, and clinical researcher at Indiana
  University School of Medicine, will give a presentation and take questions about GI issues.
• Kristen Connors who will give an update on the KS Disease Concept Model research study
• Mary Anne Ehlert, a certified financial planner and founder of Protected Tomorrows, will give a presentation on how families can set up their KS children for success over the long term. Her presentation at the 2022 conference was deemed particularly valuable.
• Eric Scheeff, IDefine’s chief scientific officer, will provide an overview of ongoing Kleefstra Syndrome research projects, including areas that IDefine is considering investing in. Eric will also talk about how KS families can support research efforts.
• A panel discussion about sleep and regression with Boston Children’s Hospital experts.

This year, there will also be entertainment options at the conference, including special performances by multi-instrumentalist and childrens singer Lindsay Munroe and Kevin Driscoll, a musical ventriloquist.

Other fun options will include swimming in the hotel pool, a group photo and an opportunity to explore Boston.