Dear KS Community,

We are excited to present the 2018 Kleefstra Syndrome Conference and Walk & Roll in Boston during the June 30th weekend!

Tickets

To make things as simple as possible, conference registration is by family. Whether 2 or 6, each family selects one "family entry" and chooses between whether childcare will be needed during the conference or not. For example, a family of 5, who requires childcare during the conference and would like to participate in the meal plan, would select the following:

• Family Entry (Childcare required) - 1 ticket
• Meal Plan - 5 tickets
• Total: 6 tickets

To assist our organizers, please include the correct name associated with each ticket (i.e. the correct name of the individual using a specific meal plan ticket).

The conference will be held at the Hilton Hotel in Dedham, Boston. A block of rooms has been reserved at a special discounted rate under the Group Code “GEN.” You can claim your room by visiting this link or calling 781.329.7900 and providing the Group Code. Rooms are First Come, First Served, so we encourage you to register early.

Beginning first with a Welcome Social on Friday night, we will have a busy day of presentations by researchers through Saturday morning. Saturday afternoon will focus on family topics and discussion before departing for our Fundraising & Awareness Walk to a nearby conservation area (shuttles provided). Sunday morning will involve a voluntary group activity with additional details to follow. The registration link for childcare is still being prepared but we thank you for your patience in the meantime. We look forward to sharing more details shortly and are excited to welcome you to Boston!

Conference Agenda:

Friday - June 29, 2018

4.30pm-9.00pm: Registration

5.00pm-9.00pm: Welcome Social

Saturday - June 30, 2018

7.30am-8.30am: Breakfast

8.30am-9.00am: Opening Remarks

9.00am-9.20am: Scientific Advisory Board Update – Research Strategy and Future

9.20am-10.00am: Kleefstra Syndrome Update by Dr. Kleefstra

10.00am-10.20am: Break

10.20am-10.40am Research Update #1

10.40 -11.00am: Research Update #2

11.00am-11.45am: Research Panel (Open Q&A)

11.45am-1.00pm: Lunch

1.00pm-2.00pm: Family Topic Presentations (Therapies, Doctors, Medications)

2.00pm-2.55pm: Family Panel (Open Q&A)

2.55pm-3.00pm: Closing Remarks

3.00pm-3.30pm: Free Time

3.30pm & 3.45pm: Shuttles departs for Walk

4.00pm-5.30pm: Walk and Group Photo

5.30pm: Return shuttle with BBQ/Pizza Dinner at Hilton

Sunday - July 1, 2018

7.30am-8.30am: Breakfast

8.30am: Shuttle departure for Boston Children's Museum

10-12pm: Boston Children's Museum

12pm: Return shuttle to Hilton

2018 Kleefstra Syndrome Conference and Awareness Walk -- Top 3 reasons to attend this year’s conference:

1. Get informed. Presentations by world-renowned KS researchers will provide you the latest updates.

2. Make life-long friends. Connect with other KS families who will share in your triumphs and challenges.

3. Empower yourself. Join in a “Walk & Roll for KS” family fundraising walk to contribute to the groundbreaking KS research already underway.