Annual Conference

Our 2017 conference will be held in Naperville, IL

  from Wednesday July 12th to Saturday July 15th.  

Below are all the details we currently have available.  We will release additional details as they become available to us.


General Information

The 2017 Conference will be held at the Naperville Marriott Wednesday, July 12th through Saturday, July 15th.  Naperville is located approx. 35 miles outside of Chicago and has a downtown Riverwalk, many great places to visit and is consistently voted as one of the best places to live.  Come and join us in is what is sure to be a great Conference and that you will get to see some old friends and meet many new friends.  If this is your first time we strongly encourage you to come with the whole family as we have lots of different programs and fun events for everybody.

The conference will begin with a registration on Wednesday July 12th in the late afternoon / early evening. This will give you an opportunity to get your conference materials, find out the schedules of speakers, purchase merchandise and sign up for events and Childcare. After registration has closed a opportunity will be available to get together and meet with some of the other families in a more social setting.

On Thursday morning the Conference starts in earnest and Childcare, provided by Corporate Kids, will be offered during the day Thursday through Saturday.  If you want to take advantage of this please make sure that you have Registered and paid for this service. Times of childcare will be posted at the Conference.

Over the course of the three days many different speakers, events and are available including 4 tracks of presentations for: the families of young children, the families of adolescents/young adults, siblings and self-advocates.  The sibling track is planned and run by our adult siblings trained in child development and facilitation.  The self-advocate track is for those affected individuals over the age of 16 who can function independently within the conference environment. There will breakout discussion sessions for each syndrome group as well as for regional groups.  Friday evening will be ladies night, a chance for the ladies to socialize together and Thursday evening will be men’s night out. The conference culminates on Saturday evening with the Starfish Dance and can guarantee that you will have so much fun, making it so hard to say goodnight and goodbye to your chromosome 18 family.


Schedule and Topic Information

(Please note that the schedule, topics, and presenters are subject to change.)

Tentative Schedule (coming soon)

Topics and Speakers (coming soon)

Childcare and Teen Room Tentative Schedule (coming soon)

Ladies and Men’s Night Information (coming soon)



Registration will tentatively open January 31st!



Our 2017 conference will be hosted at the Naperville Marriott.  The Marriott is offering a discounted group rate of $124/night (Excluding Tax).  This rate will be available until June 27th 2017 so book early to ensure you get a room. The hotel will provide enough refrigerators for our group.  However, not all rooms come equipped with refrigerators.  Some rooms you may need to request a refrigerator be delivered, please inquire when booking.  If you require a bath tub this request needs to be made when reserving as most rooms just have showers.  Rooms do not have microwaves. Please plan accordingly.

Parking is free and no valet is available.  The Marriott has two busses available on a first come first serve basis that will transport you within 4 miles of the hotel.

No shuttle service is available from Chicago O’Hare Airport (ORD – 20 miles) or Chicago Midway (MDW – 30 miles).  More details can be found here

The Registry has negotiated that you will not be charged for internet in your hotel rooms.  Please make sure you ask for this at Registration.

Book your room here or call +1-630-505-4900 to make your reservation’s directly with the hotel or you can also call the Marriott Toll-Free Reservation Center +1-800-228-9290

Are you planning to extend your stay in Naperville before or after the conference?  Check out this list of area activities.  


2017 Conference Committee

Conference Chairs – Kathy Borello / Ivette Ruiz

Hotel contact/audio visual – Neale Parker

Registration – Leah Gransbery

Childcare – Kathy Borello

Volunteer Coordinator – Kathy Borello / Ivette Ruiz


Helpful Resources

Naperville Convention & Visitors Bureau

Downtown Naperville

Naperville City Council


Our 2016 conference was held in San Antonio, TX from July 10-13th.  

San Antonio 2016 Annual Conference Review

It was July and it’s Texas so you know it was going to be hot.  The weather didn’t disappoint as it reached close to 100 degrees outside on the San Antonio Riverwalk.  Thankfully during the day our 320 participants enjoyed the busy schedule in the cool of the meeting rooms.  They took part in the many different aspects of learning new information and net working with old and new friends. Our siblings and self-advocates had the exciting opportunity to see a presentation by Dinosaur George and bang drums with Drumming Around.

MCG_3668Our conference speakers gave many different points of view ranging from the medical perspective to future care and financial planning.  Most speakers donated their time and wanted to express their many thanks to all of those that participated.  One highlights of the conference was the upcoming celebration of 25 Years of collaboration between the UT Health Science Center in San Antonio and the Chromosome 18 Research Center that will be celebrated on August 22nd 2016. This 25 year journey has seen Jannine Cody become the world’s leading expert and has made both the Registry and Research Center the leading authority on all aspects of Chromosome 18.

Our main focus at every conference is to design the program for the entire family with multiple aspects that get everyone engaged.  This year we were happy to host several after hours activities including self advocates night at Dave & Busters, siblings outing at the Buckhorn Museum, and Ladies and Men’s (Moms and Dads) night out at an iconic Mexican restaurant right on the Riverwalk.  Everything culminated in the last night for the Starfish Dance that almost 375 people attended.  As always, a fun evening was had by all.  Batman, Elsa, and Jasmine kicked off the evening and stopped by to say hello to get everybody in the party mood.  This year we changed things up a little with 13 families or organizations fundraising $1,500 or more to have a table named after a loved one.  We would like to acknowledge our corporate sponsors for the evening; Valero Energy Foundation (Gold) and Whataburger (Bronze).  In addition the following people were table sponsors – Aldrup Family, Gladys Arikan, Borello Family, Elizabeth Cody, Jannine Cody, Gallardo Family, Annice Hill, Lacey Family, Masterson Clan, Rebecca Parker Family, Stoddard Family, Claudia & Jim Traa & Family, Woodfield Family.

aIt was also fantastic, as we were in our headquartered home of San Antonio, to have so many of the Chromosome 18 Research Center staff taking part and being on hand to provide so many health, wellness and research aspects to the conference. Also we made full use of being in San Antonio with about 20 people being part of two personal tours of the Research Facilities at UT Health Science Center on Thursday, 14th July. Thanks also to all those families that took part in the blood clotting research on that Thursday as well.

Of course it takes many people to make our annual conference such a success and would like to thank everyone that donated time and effort to make the conference so engaging. We would also like to thank everyone that donated silent auction items that raised over $10,000 to help toward the cost of the conference that this year was approximately $102,000.  Of course we love hearing your opinions and it’s not too late to e-mail us or to get involved for next year.

Thank you to Positive Exposure & Marie McGing for providing us with these amazing conference photos.  

Future Conference Locations

July 12-15, 2017- Chicago Marriott Naperville, 1801 North Naper Boulevard, Naperville, IL 60563

July 1-4, 2018- Renaissance Baltimore Harborplace Hotel, 202 East Pratt Street, Baltimore, MD, 21202

Past Conference Locations
2016- San Antonio, Texas
2015- Salt Lake City, Utah
2014- Stamford, Connecticut
2013- Savannah, Georgia
2012- San Antonio, Texas
2011- Indianapolis, Indiana
2010- Tulsa, Oklahoma
2009- Las Vegas, Nevada
2008- San Antonio, Texas
2007- Plymouth, Massachusetts
2006- Anaheim, California
2005- Estes Park, Colorado
2004- San Antonio, Texas
2003- Hershey Pennsylvania
2002- Niagara Falls, Ontario, Canada
2001- Midway, Utah
2000- Boerne, Texas
1999- Arlington, Virginia
1998- Winter Park, Colorado
1997- Oakbrook, Illinois
1996- Memphis, Tennessee
1995- San Antonio, Texas
1994- Schaumburg, Illinois