Jun 22 - 24
Thursday, June 22, 2023 - Saturday, June 24, 2023 Drew University
Ehinger Center
36 Madison Avenue
Madison, NJ 07940

Please join us for our first in person research conference and family meeting. Please see full details on activities planned for June 22-24. We are looking forward to meeting you!


For all those participating in the Natural History Study with Columbia University, a continental breakfast and box lunch will be provided to parents and participants there that day. A special kid-friendly lunch will be available as well.

Family Pizza Night
Please join us back at Drew University, Ehinger Center at 5:45 PM for a family pizza night! Get to talk and mingle with other CTNNB1 Families.

For all those participating in the Natural History Study with Columbia University, a continental breakfast and box lunch will be provided to parents and participants there that day. A special kid-friendly lunch will be available as well.

Welcome Reception
Please join us back at Drew University, Ehinger Center at 5:45 PM for our Conference Welcome Reception. Spend time with other CTNNB1 families and many of our speakers at this special event. A buffet dinner will be served with kid friendly options as well. The children can enjoy a fun dance party from 7:00 pm – 7:45 pm to wrap up a fantastic evening.

Coffee and beverages will be available when doors open at 8:30 am for our conference.

A box lunch will be provided for all adults and a special kids lunch for all children/young adults.


All events will be held at the Ehinger Center at Drew University.

The Madison Hotel has graciously offered their shuttle to our guests which accommodates 11-12 passengers. You can connect directly with the front desk for more information, but it is currently scheduled to run:

6/22 – Depart Madison Hotel at 5:20 for Drew University. 7:30 PM pick up from Drew University back to Madison Hotel.

6/23 – Depart Madison Hotel at 5:20 for Drew University. Pick up from Drew University back to Madison Hotel at 7:45 pm.

6/24 – Depart Madison Hotel at 8:15 am for Drew University. Pick up back to Madison Hotel at 4:15 pm.

We have booked a shuttle for speakers and guests staying at the Hyatt Regency. This will be filled on a first come first served basis. Please note that a few of our speakers will be relying on this shuttle service to get to and from the hotel.

Shuttle Company – Broadway Elite [reservation under CTNNB1 Conference] [973-515-8808]

6/23 – Depart Hyatt Regency at 5:10 pm. 23 person mini-coach. 7:45 pm return to Hyatt Regency following Welcome Reception.

6/24 – Depart Hyatt Regency at 8:10 am for Drew University (23 passenger mini-coach). Return to Hyatt at 4:15 pm (12 passenger shuttle).

For those driving there are two parking lots. There is a parking lot directly behind the Ehinger Center (LOT D (25 spots) – refer to the campus map) which is most easily accessed from Glenwild Road. If you have a child that struggles to walk or uses a wheelchair, please use this lot.

There is an additional Main Lot (150 spots)– Lot L which can be accessed using Lancaster Road. There will be signage to direct you. There is a short walk from here to the Ehinger Center. 

For car services we would recommend Uber.

  • From Interstate 287, take exit 35. At the end of the exit ramp, follow signs for Route 124 east (Madison Avenue). Travel three miles and turn right at the Lancaster Road traffic light onto the Drew University campus.
  • From Northwest New Jersey via Interstate 80 east, take exit 43 (Interstate 287 south, Morristown). Proceed from Interstate 287.
  • From Northern New Jersey and New York City (George Washington Bridge) via Interstate 80 west, take exit 43A (Interstate 287 south, Morristown), staying to the right in the local lanes. Proceed from Interstate 287.
  • From Western New Jersey and Eastern Pennsylvania via Interstate 78 east, take exit 29 (Interstate 287 north). Proceed from Interstate 287.
  • From Southern New Jersey via NJ Turnpike (Interstate 95 north), take exit 10. Follow signs for Interstate 287 north. Proceed from Interstate 287.
  • From Eastern New Jersey and New York City (Lincoln and Holland Tunnels) via NJ Turnpike (Interstate 95 south), take exit 14. After the toll plaza, follow Interstate 78 west to exit 48 (Route 24 west, Springfield/Morristown), and then to exit 7A. Follow signs for Route 124 West/Chatham. Continue through Chatham and Madison (Main Street). Drive through downtown Madison and bear left under the railroad trestle to the second traffic light, at Lancaster Road. Turn left onto the Drew University campus.

Kids’ Activities

Annie Wood, on our board of directors, is offering two special sib shops for siblings of our CTNNB1 children at Drew University. Thursday 6/22 from 4:30-5:30 pm for ages 7 and up and Friday 6/23 4:45– 5:30 pm for ages 13 and up. This is a great opportunity for your children to meet others who also have a sibling with CTNNB1 and to create everlasting bonds. These workshops will take place on the patio space of the Ehinger Center (weather permitting). Please rsvp to Annie if you would like your child to participate (annie@curectnnb1.org).

The last 45 minutes of our welcome reception on 6/23 will turn into a dance party for our children. Encourage them to hit the dance floor and enjoy some kid friendly tunes while bonding with their peers.

We have an incredible group of volunteers lined up to play with your children on the day of the conference so that you can listen to our speakers. When you arrive at the conference you will check in and then bring your child to The Space where you can sign them in. We ask that you please check on your children between each speaker and assist them with the bathroom. We will also ask you to provide your cell phone number to our volunteers in case they need you more urgently.

Our hangout room and activities are being organized by our very own, Nicole Dashiell (mom to Caroline) and Caroline’s special education teacher who will be with us all day. We will have different activities for the children based on the child’s age and abilities. There will be water and some light snacks available in the room.

Please pick up your child during the lunch break so that they can enjoy a child-friendly lunch with their family and give our volunteers some time to regroup before the afternoon session.

Seeing Eye Dogs will be making a special visit for our CTNNB1 conference on Friday, June 23 from 12 pm – 1 pm. Meeting place will be outside the Ehinger Center on the patio space. Everyone is welcome!

Blood Draws

I hope you received an email from COMBINEDBrain & Simons Searchlight about the opportunity to donate blood. CTNNB1 Connect & Cure is a member of COMBINEDBrain, and we have created our own biorepository with them. Simons Searchlight is collecting samples to look at biomarkers and also for their biorepository for future research use. Please note that all the cell lines that will be studied as part of our research agreement with Tufts actually came from Simons Searchlight donations, so this is important. This will consist of 1 blood draw for both opportunities and their teams are fantastic. You can drop in on Friday 6/23 or Saturday 6/24 to participate. Please follow-up with Donnielle Rome-Martin from COMBINEDBrain with any questions (donnielle.martin@combinedbrain.org).

Talk to a Genetic Counselor

A member of Columbia’s team will be available on 6/24 to answer questions. We plan to have a meeting spot near the registration where you can ask questions.

Looking to Get Involved?

CTNNB1 Connect & Cure is seeking dedicated individuals to join our team. Please fill out the Volunteer form if you are interested. Our current board members will be happy to connect with you at the conference to answer any questions!

Registration Fee

Please make a suggested donation of $50 per family to help cover food expenses. Click on the button below.

We are greatly looking forward to meeting you. Currently have 46 families signed up to attend and we know this will be such a huge step forward for our community. See you soon!

Can’t Attend In-Person?

We will be streaming the conference via Zoom on Saturday, June 24th.