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.


With the 24th Annual Chromosome 18 Conference approaching quickly, we are excited to announce the launch of this year’s Chromosome 18 Registry and Research Society conference merchandise! Online ordering will only be available for a limited time, so order today!

You can pre-order your merchandise online and pick-up your order when you arrive in Naperville.  Or order online and have it shipped directly to you!  All shipping fees are set by our supplier and are unable to be waived. Direct ship orders may be delivered after the conference.  Limited quantities and sizes will be available at the conference, so we encourage you to order in advance.

All proceeds from the sale of merchandise go directly to the Registry.

Purchase Now!

General Information

The 2017 Conference will be held at the Chicago 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 what is sure to be a great conference where you’ll 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.

Over the course of the three days many different speakers and events are available including four 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 be breakout discussion sessions for each syndrome group as well as for regional groups. A Men’s Night is scheduled for Thursday evening and Friday evening will be a Ladies’ Night a chance for the ladies and men to gather and socialize. A Sibling Outing and Self-Advocate Outing are planned as well.

The conference culminates on Saturday evening with the Starfish Dinner and Dance and can guarantee that you will have so much fun, making it hard to say goodnight and goodbye to your Chromosome 18 family. We are pleased to announce that Eugenia Cheng will be joining us the guest of honor for the Starfish Dinner & Dance. You can learn more about Eugenia here. The Starfish Dinner & Dance is open to all (registered conference attendees, family, friends, community partners and sponsors). Tickets for unreserved seating are included in the conference registration.  All others may purchase tickets here. This is a perfect opportunity for anyone who is not attending the conference to be part of our special event. 

Conference check-in is from 3pm-6pm on Wednesday, July 12, 2017, giving 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.  The conference will conclude with the Starfish Dinner and Dance from 6-10pm on Saturday, July 15th.

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.

Lunches will be provided Thursday & Friday.  Dinner will provided at the Starfish Dinner and Dance on Saturday evening.  Additional meals will be at your own expense, please plan accordingly. The hotel is near many restaurants and food options – here are a few options.

Schedule Information

(Please note that the schedule and room assignments are subject to change.)

Tentative Schedule

Childcare and Teen Room Tentative Schedule

Hotel Floor Plan


Registration Forms:

(Feel free to download, print, and complete these forms before arriving and bring to the registration table at the conference.)

2017 Photo Release

Childcare Release

Registration Checklist


Topics and Speakers

(Please note that topics and speakers are subject to change. This list is still being updated.)

Speaker Biographies


PATH to a Better Quality of Life – Vicki Niswander

Social Security Question and Answer Session – John McGing

Social Security Question and Answer Session Handouts – John McGing


Integrative Medicine in Pediatrics – Robert C. Dumont, MD

Understanding Autoimmune Disorders – Robert C. Dumont, MD

Children’s Gastrointestinal Problems – Robert C. Dumont, MD

Able Accounts: A New Tool – Benjamin A. Rubin

Options for Independent Living for Adults with Developmental Disabilities – Raymond Geimer

Constipation, Feeding Issues & Pediatric Nutrition – Cindy Baranoski MS, RDN, LDN

You, Me and the IEP: Communication Skills for Parents – Ron Chilcutt

Post Secondary Education: Finding the Right Fit – Chris Wright

Intro to Essential Oils – Bernadette Krysiak


Additional Events & Outings

Thursday, July 13th

All Kid’s Outing to Naperville Yard

Sibling’s Outing to Naperville Yard

Men’s Night

Self Advocate Night at Pour House

Friday, July 14th

Self Advocate Outing to Bowlero

Ladies Night

Sibling’s Night at Pour House 


Registration is open.

This year there will be one conference price for all participants and you have the option to choose a stipend from Chromosome 18 or donate it back to the Registry.  Stipends are generated from funds raised throughout the year and distributed to help offset the price of conference fees.  Upon registering, you will notice the regular participant conference fees is $300 and you can choose to use the $125 stipend, bringing the conference fee to $175 per participant.  For those participants needing supervised care (baby, child and teen childcare by Corporate Kids) you will also find two registration options.  You can choose to register these participants at the full conference price with childcare fees at $525, donating the $325 Chromosome 18 stipend to the Registry or you can use the stipend, reducing your cost to $200 per participant.   Everyone must pre-register online. There will be no on-site registration.

Register Now!



The Chicago Marriott Naperville 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.  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.  Click links for a full list of hotel amenities and accessiblity.

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.

Book your room here or call +1-630-505-4900 to make your reservations directly with the hotel or you can also call the Marriott Toll-Free Reservation Center at 800-228-9290. Please be sure to mention that you are with The Chromosome 18 Conference in order to receive the discount. Families often comment that staying in the same hotel as the conference, and with the other families, is critical for the full “Conference Experience”.  Please reserve your accomodations early.  Once the Registry’s block of rooms are fully booked, our members are not guaranteed a room in this hotel.  Your reservation is your responsibility. First come, first served!

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


Corporate Kids (CK) will be providing the childcare for this year’s conference.  In addition, we will be offering program tracks for Self-Advocates and Siblings.  We will have a lounge and hang-out space for kids in each of these groups. It will be a place where the kids can sign themselves in and out (with their parent’s permission).
Schedules will be available for CK childcare activities closer to the date of the conference!

Starfish Dinner & Dance 

Everybody will be enjoying a wonderful night to include a three-course meal, awards presentation and silent and live auctions and lots of dancing as the culmination of a fantastic few days as the annual conference draws to a close at our Starfish Dinner & Dance that will take place on Saturday, July 15th from 6:00 p.m. to 10:00 p.m. We are pleased to announce that Eugenia Cheng will be joining us the guest of honor for the Starfish Dinner & Dance. You can learn more about Eugenia here.

The Starfish Dinner & Dance is open to all (registered conference attendees, family, friends, community partners and sponsors). Tickets for unreserved seating are included in the conference registration.  All others may purchase tickets here. This is a perfect opportunity for anyone who is not attending the conference to be part of our special event. 

Reserved Table Fundraiser 

Raise at least $1,500 and you’ll be able to pick your choice of table (10 top) in the Ballroom for the Starfish Dinner & Dance and choose how you would like to be recognized by selecting your table name along with reserved seating.

Want to be right in the front, up close and in the center of the action? Prefer to be at the back to take it all in?  You decide…..

Click here for more information on this special fundraiser! 

Frequently Asked Questions

Attendees frequently have questions about what to expect at the conference and how registration works.  We invite you to read our FAQ’s to learn more about the conference and contact us with any additional questions!  Feel free to contact the Registry office for registration assistance and / or questions at [email protected] or call 210.657.4968

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