INFORMATION FOR FIRST TIME FAMILIES
Coming to the Chromosome 18 Conference for the first time is a big decision for a family. It comes with the need to organize travel, pay for extra expenses, and face a new situation where you might not know anyone. Why would you want to come to the Chromosome 18 (C18) Conference for the first time and what would you and your family expect to get out of this new experience.
We’ve learned a lot from the over 2000 families from around the U.S. and the world that have attended Conference over the past 29 years. We aim to give you the best possible idea of what to expect from this totally unique and completely immersive experience into the wonderful community that is C18!
“The 2023 conference in Columbus, OH, was my first and most certainly not my last. Leading up to the conference, I did not know exactly how to feel. What I did not realize is that this conference would open a world of information, resources, and more importantly, friendships that would be for a lifetime.”
– 2023 first-time Conference attendee
What is Conference? The Chromosome 18 Conference is the highlight of the year for many of our families. The event is organized and designed by volunteers in coordination with the Registry staff. Our families lead the charge in preparing Conference – this unique event is created by Chromosome 18 families to give Chromosome 18 families a time and place to meet other families, find new friends, gain extra support, and learn more about chromosome 18 conditions from the medical experts. The foremost global experts on the chromosome 18 conditions, Dr Cody & Dr Hale, will be available to present updates on research from the Clinical Research Center, as well as answer your questions during sessions and after on a one-on one-basis. At the same time, we have experts from a variety of fields, like occupational therapy, special-needs trusts, autism, mental health, neurology, and more providing educational sessions and Q&As for families on their specialty topics. These sessions take place from morning through the afternoon on Monday – Wednesday of Conference, which breaks in between and during lunch time.
Interactive Sessions are also held to support our C18 Self -Advocates and Siblings as well, to help engage and share their stories with the group while their parents and caregivers are in educational sessions Conference is just as impactful for siblings as it is for self-advocates. The Sibs’ track is three days of education and fun where chromosome 18 siblings (typically 13 and older) will discover their shared journeys and make friendships that last a lifetime. We also have syndrome-specific breakout sessions where you’ll get to meet a group of other parents and caregivers with children who have the same chromosome 18 condition to learn from and support one another and build community that will last a lifetime. And of course, we ensure that you also plenty of time to socialize, have fun as a family, and connect with other families during the Conference schedule, with the 3 days culminating in the Starfish Dinner & Dance, the highlight of Conference.
“I do not believe there are any words to truly describe the happiness and relief to join a community that understands! I met so many families and staff members that were armed with experience to shed light on so many unanswered questions.”
– 2023 first-time Conference attendee
What to expect as a first-time family: Firstly, a warm welcome to you, as the people you meet at Conference might be the first group that will understand everything you are going though as a chromosome 18 parent or caregiver. Support is offered before you even arrive with a mentoring family that has attended Conference before. You will be connected to this family in case you have questions before you attend. Once you arrive and check in on Sunday afternoon, you will receive all your Conference materials that will include a list of the speakers, list of other attendees, schedule, room map plus lots of other details on events happening during the next few days. Your name tag has an identifier as a new family and when other families see this, many will stop and introduce themselves. Before Conference even starts, we have a welcome session with all the new families – here you will get the opportunity to visit with lots of other families on their first-time journey, just like you.
Conference Highlights – Everybody enjoys different aspects of Conference, but some highlights are the opening reception on Sunday night, the update from the Chromosome 18 Clinical Research Center with Drs. Cody and Hale, Self-Advocate and Sibling panels where you get to hear different perspectives on the chromosome 18 lived experience, and of course, the grand finale – the Starfish Diner & Dance on Wednesday night. The Dinner & Dance isn’t your regular stuffy gala, ours is about families getting out on the dance floor having fun with all the new friends they’ve made at Conference.
What’s it going to cost? For the first time ever, C18 is offering an introductory $100 registration cost per person for first-time attendees! If you book our hotel room as part of the special C18 Room block, the rate includes a hot breakfast during your stay. Lunch is provided for 2 days during Conference, and your entry into all the daily sessions, opening reception and Starfish Dinner & Dance is included in the registration fee. You are responsible for booking your travel and hotel room (free parking at hotel), as Conference registration does not include this. We recommend booking your hotel room as soon as possible, as we have a limited number of rooms in the C18 room block at the special Conference rate that are available to attendees at a first come, first serve basis. Click the “Hotel” button at the bottom of this page to find the hotel contact info and the link to the room booking portal
Day Sessions – It’s up to you to decide if you want to try and go to all the sessions, some of them, or none at all! We know that while you might plan to attend everything, things happen when you travel with children, and you are under no obligation to attend any session – all are open and available to you if you so choose. Each session is detailed with a topic and speaker bio, which provides details on what the medical professional or expert that is leading the session will cover We will have some quiet rooms with toys for children available for caregivers to use during sessions and more details will be posted about this option on our website closer to the event.
What happens in the evenings? We offer group social activities in the evenings during conference for Men, Ladies, Siblings, and Self-Advocates, with the cost for each normally under S50 per person including food. These evenings out are optional and are not included in the cost of Conference registration – you can choose if you would like to attend or not. Self-Advocate night is also a big hit – your affected family member would need to be independent to attend alone, or if they are unable to do so, they will need a family member to attend with them as a chaperone. Sibling night is also organized for sibs that are independent and/or old enough to attend (typically pre-teens and up). Details of these Nights Out will be posted on the website closer to the date of Conference. Even if you choose not to attend the formal Nights Out, during most evenings you will find plenty of opportunity to socialize with other families together in the bar or pool area.
What will I get out of attending? Many families that have attended Conference say it has changed their lives. That can be difficult to believe, but some families come back every year as their part of their family summer vacation, as they feel deeply connected to the C18 community after the first time. At Conference, you will discover so many different new tips from other families and hear how other parents who know the journey have managed tough situations with their special-needs children and share their solutions. Be prepared for hugs, our self-advocates love to meet new families and make them feel welcome. Conference is a one-of-a-kind opportunity to meet new friends, join the Chromosome 18 community, and come home connected and inspired.
Who should Come? It’s just not for the parents! Bring the whole family including grandparents, siblings, and your affected child. Everybody gets involved and rest assured, your kids will enjoy the Conference just as much (if not more) than you!
Still Have Questions? Have a look at the FAQs or feel free to reach out to office@chromosome18.org with any other questions you might have.
See you in Charlotte, NC from July 7 -10 at the Hilton Charlotte Airport Hotel for an experience you will never forget!