Excitement builds for Family Conference!

In less than a month more than 200 people from our IDefine community will gather at the 2024 North American Kleefstra Syndrome Family Conference to learn the latest from our doctors and specialists, engage in meaningful conversations with other families and give our children time with one another to create memories for a lifetime.

If you missed the registration cutoff for the June 20-22, 2024 conference at the Embassy Suites by Hilton Boston Waltham in Massachusetts, we have some GOOD NEWS!  We have extended registration through this weekend!  Registration will close Sunday night, June 2, at 11:59pm.

The conference agenda is set and includes an intentional mix of learning, fun and opportunities for KS families to connect.

Conference highlights include talks by:

• Professor Tjiske Kleefstra, for whom KS is eponymously named and head of the Department of Genetics at Erasmus Medical Center. Dr. Kleefstra’s talk will be on what she and her team have learned based on data collection and patient care since they identified the first EHMT1 variants causative for the syndrome. She will also discuss a draft of international clinical guidelines for Kleefstra syndrome.

• Dr. Siddharth Srivastava (Dr. Sid) from the Kleefstra Syndrome Clinic at Boston Children’s Hospital will give an overview on MRI findings in KS, seizures and EEGs. He will also talk about how families can help physicians with the new ICD-10 code for KS.

• 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.

• 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.

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.

We are also thrilled to feature:

• “Our Rare Journey: Stories from our Kleefstra Community”: On Friday, we will have a videographer onsite to film families willing to share their story!  Sign up to let the world hear your story!
• “Caregiver Village” on Saturday
  • Genetic Counseling group sessions: Sign up for these informative sessions about Kleefstra syndrome and genetic reports.
  • Participate in the our Biorepository Collection
  • Learn more about fundraising, our data collection initiatives, and advocacy!

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.