Jun 22 - 23
Thursday, June 22, 2023 - Friday, June 23, 2023 Drew University
Ehinger Center
36 Madison Avenue
Madison, NJ 07940

Welcome to our CTNNB1 Natural History Study Page in collaboration with Columbia University. This study involves clinical assessments by a specialist that will take place the two days prior to the research conference at Drew University to investigate multiple domains of CTNNB1 disorder, including motor function, cognition, nervous system issues, and the brain’s electrical activity. This data will advance the clinical understanding of CTNNB1 syndrome and help us prepare for clinical trials.

The registration period for these assessments ended on February 5th. If you signed up, please look for an email from geneticresearch@cumc.columbia.edu for your child’s evaluation schedule.

  • All participants will be expected to arrive at least the evening prior to their scheduled research day/days so they are rested for assessments. The assessments will take place at Drew University where the welcome reception and conference are taking place.
  • In order to participate, the patient must be enrolled in Simons Searchlight and up-to-date on their Simons participation
  • For specific questions about the study you can reach out directly to Sean Calamia at Columbia University – sc5009@cumc.columbia.edu


Madison, NJ is located approximately 17 miles and 26 minutes by car from Newark International Airport. Laguardia and JFK airports are also within driving distance.

  • 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.

Where to stay

The university will have 38 double dorm rooms available on campus for families to use. Cost is $48/bed/night and $22 Linen Pack which consists of Towels, Sheets, Pillow and Blanket. Please email lauren@curectnnb1.org to reserve a room and specify the dates and number of guests.

Located 1.7 miles away from Drew University. Reserve by May 21st to get the Group Rate!

Online booking:

  • Go to themadisonhotel.com
  • Click “Use Group/Corporate Code”
  • Click “Add Code” drop down and select “Group Attendee”
  • Enter Group Attendee Code CTNNB1 in the box (not case sensitive)
  • Select and go to the next step to confirm details
  • Proceed to complete the reservation

Booking by phone:

  • Call the Madison Hotel Reservation Dept at (973) 285-1800 M-F 9:30am-5:30pm
  • Ask for the group rate through the “CTNNB1 Connect & Cure Medical Conference Group Block”

Room options

  • King Room (one king bed) @ $180.00 per room per night, plus $20.00 Facility Fee and 14.625% NJ State and Occupancy Tax
  • Deluxe King Room (one king bed and one sofa sleeper) @ $210.00 per room per night, plus $20.00 Facility Fee and 14.625% NJ State and Occupancy Tax


  • Deluxe Continental Breakfast served daily in the Lobby, daily 7:30am- 10:00am  
  • Lobby Welcome Reception Monday – Thursday, 4:30pm – 5:30pm
  • 2 Bottles of water upon arrival
  • $20.00 Food & Soft Drink Restaurant Credit PER NIGHT to use in GK Red Dog Tavern or Rod’s Steak & Seafood Grill 
  • Complimentary Wi-Fi
  • Complimentary Parking
  • Fitness Room Center

Restaurants: two on-property restaurants for dine-in, take-out, and room service

  • Rod’s Steak and Seafood Grille – award-winning steakhouse, open for dinner 4pm-9pm (reservations required)
  • GK’s Red Dog Tavern open daily for dinner 4pm-9pm and lunch Fri-Sun 12pm-4pm

Located 4.5 miles away from Drew University, located in downtown Morristown with access to restaurants and shopping

Group rate booking link: https://www.hyatt.com/en-US/group-booking/MORRM/G-CTNN?fbclid=IwAR2YpCMTnJ_B7-xvWq116nbj55sOyoZyKIOYNPDFg41ginp-JsXHzfgtvvY

Room options:

  • 1 King Bed – price before fees/taxes: $209
  • 2 Queen Beds – price before fees/taxes: $209
  • 1 King Bed High Floor – price before fees/taxes: $229

Located 2.6 miles away from Drew University. Their one-bedroom and two-bedroom suites offer full kitchens, spacious bedrooms, stylish bathrooms and comfy living rooms

Booking link: https://www.hyatt.com/en-US/hotel/new-jersey/hyatt-house-morristown/morxm?src=corp_lclb_gmb_seo_morxm

Room options:

  • Two Bedroom Trio Suite
  • Two Bedroom King/King Suite
  • One Bedroom King Conference Suite
  • One Bedroom King Suite
  • One Bedroom Double/Double Suite
  • Accessible 1 Queen Bathtub
  • Accessible 2 Bedroom King/Double Roll-in Shower
  • Accessible 2 Bedroom King/Queen Bathtub


  • Free breakfast
  • Free internet access
  • Free parking
  • On-site restaurant
  • Fitness center
  • Pool
  • Pet friendly
  • Digital key
  • Digital check-in
  • Meeting facilities