Invitation to be our guests

Bereaved Family Registration – 2026 CDKL5 Educational Family Conference

We know that being part of the CDKL5 community does not end with the loss of a child, and we want you to know that you remain a valued and important part of our family. For the first time, the 2026 CDKL5 Family Educational Conference will include programming specifically created for bereaved families—offering space to gather with others who understand this unique journey, guided by a licensed counselor, and supported by the shared strength of community. We are honored to offer complimentary conference registration to bereaved families and to welcome you as our guests for the full conference weekend. Whether you choose to participate in the bereavement‑focused sessions, the broader conference programming, or simply to be present and connected, please know that you belong here, and we would be honored to have you with us.

Location

The 2026 CDKL5 Family Educational Conference will be held in the Philadelphia area at the Sheraton Bucks County Langhorne, located just 35 miles from the Philadelphia Airport (PHL), 25 miles from downtown Philadelphia, and 10 miles from Trenton Mercer Airport.

Rooms are available at a discounted rate as part of the IFCR room block when booked by May 19, 2026.

Sheraton Bucks County Langhorne

Tentative Agenda:

Thursday Evening: Meet and greet social for everyone.

Friday: Agenda for specific programming coming soon! The day will include breakfast for all attendees, some specific programming for bereaved families with time to support one another and be together. The day will conclude with the evening Tribute Dinner for the entire community, honoring all of our loved ones who living with this diagnosis and those who have passed and are forever remembered.

Also on Friday, thanks to the generous support from UCB, we are hosting Sibling Camp, and this is open to kids ages 7+. The details for this camp can be found in the 3rd paragraph of the “About” section of the main conference website page. The FAQ’s also have details for this and other questions.

Saturday: The day will start with breakfast for all attendees. There is no specific programming for bereaved families this day, but the families can continue to visit, support one another, and share. Attendees are welcome to attend any of the conference sessions of interest to them, and there will be lunch for everyone.

Conference Registration for Bereaved Families
Name
Name
First Name
Last Name
Address
Address
City
State/Province
Zip/Postal
Country
Consent to receiving text messages
Relationship to loved one you are honoring
Tribute Dinner Main Entree Selection
Do you have any dietary restrictions?
We will do our best to accommodate dietary restrictions whenever possible. Please note that while we strive to meet all requests, we cannot guarantee that special accommodations will always be available.
T-Shirt Size
Would you Like to register another conference attendee?

Additional Conference Registrations

First
Last
Consent to receiving text messages
Relationship to loved one you are honoring
Tribute DInner Main Entree Selection
Do you have any dietary restrictions?
We will do our best to accommodate dietary restrictions whenever possible. Please note that while we strive to meet all requests, we cannot guarantee that special accommodations will always be available.

We will do our best to accommodate dietary restrictions whenever possible. Please note that while we strive to meet all requests, we cannot guarantee that special accommodations will always be available.

T-Shirt Size
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Do you have children ages 7 and up to register for Sibling Camp?
Our Sibling Camp is back by popular demand!
On Friday morning, they will spend time socializing together as a group and get to know each other. Then it's off to Funzilla for 3 hours of active fun. Go Karts, Ninja Obstacles, Air Bag Jump, Arcade Zone and more!
Round trip transportation and lunch are included thanks to our Sibling Camp Sponsor, UCB. Approved volunteer camp chaperones will be with the group to ensure the day is safe and fun for all.

Siblings Camp Registration

Sibling Shirt Size
Sibling Relationship
By checking the box, I forfeit all right to bring a suit against the International Foundation for CDKL5 Research for any reason. In return, my child may participate in the Siblings Camp. I will also make every effort to make sure that my child obeys safety precautions. I will ask for clarification if needed. In an emergency, I acknowledge that I am solely responsible for all medical and other costs arising out of bodily injury or any loss sustained through participation in this activity. I authorize program staff to secure any licensed hospital, physician and/or medical personnel any treatment deemed necessary for the participant’s immediate care. I have read the above carefully before signing. Further, I understand that this release and waiver of liability shall be effective from June 19,2026.
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International Foundation for CDKL5 Research (IFCR) permission to photograph, film, and record you and any registered family members throughout the event. These images and recordings may be used in IFCR publications, promotional materials, social media, livestreams, educational resources, and other communications related to our mission. By registering, you acknowledge and agree that: Your participation serves as consent for IFCR to capture and use photo, video, and audio recordings of you and your registered attendees. IFCR may edit, reproduce, publish, or distribute these materials without additional permission or compensation. This consent applies to group scenes, candid moments, general event coverage, and any activity taking place in public or conference‑hosted spaces.
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