Chromosome 18 Decoded – Annual Family Conference

We are so looking forward to being back in person celebrating the Chromosome 18 Decoded – 27th Annual Family Conference! The 2022 Chromosome 18 Decoded will be held at the San Antonio Marriott Rivercenter in downtown San Antonio, TX from Thursday, July 7th through Saturday, July 9th (check-in the afternoon of July 6th).

The success of the conference always relies on our wonderful chairs and for 2022 this is Dave & Tam Aldrup. They are supported by our volunteer Conference Committee that gets involved in all aspects of planning and running the Conference. If you would like to be part of this great group and help us make this year’s conference a great success, please reach out to office@chromosome18.org.

General Information

To the Chromosome 18 Members,

We are so looking forward to being back in person celebrating the Chromosome 18 Decoded – 27^th Annual Conference. The 2022 Chromosome 18 Decoded will be held at the San Antonio Marriott Rivercenter from Thursday, July 7^th through Saturday, July 9th in the Alamo City.

This is the first time we have gotten together in person for Conference since 2019, and of course our focus will be making sure that our families are in a safe and welcoming environment. Because of the Covid-19 global pandemic, we will be following CDC guidelines to make sure that everybody gets to enjoy the fun. As we are unable to predict what the COVID landscape will look like this summer, it is impossible to establish protocols for event safety this far in advance. We are monitoring the pandemic closely to make the best decisions to ensure our families health and safety. Please know that we will follow the most current CDC recommendations on safety practices at the time of the Conference, and we will communicate our COVID response plan closer to the event date.

San Antonio is the 7^th largest city in the United States and has a variety of vibrant local attractions you will want to experience. You can take a picture in front of the Alamo, ride the Go-Rio boats on the Riverwalk, go to Morgan’s Wonderland and enjoy the waterpark or have fun at the Do-Seum. You will be sure to find something you love! 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.

The conference culminates on Saturday evening with the Starfish Dinner and Dance, where we know you will have so much fun that it will be hard to goodnight and goodbye to your Chromosome 18 family. 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 once registration opens. This is a perfect opportunity for anyone who is not attending the conference to be part of our special event.

See You in San Antonio July 7-9!

– Tam & Dave Aldrup, Conference Chairs

Schedule & Map2

Schedule

Hotel Map

Registration Forms

Check-In & Photo Release (Coming Soon!)

Childcare Registration Form (Coming Soon!)

Topics & Speakers

We are excited that this year’s conference will have a wide range of speakers and topics. There is definitely something for everyone! Our schedule is not final and is subject to change. Please check the Tentative Schedule for a complete list of speakers and topics (subject to change). Some of this year’s topics will include:

Research Updates from Dr. Cody & Dr. Hale

Love & Logic Workshop

Positive Exposure with Rick Guidotti

Sibling and Self-Advocate Panels

Syndrome and Regional break-out groups

Physical Therapy

Immunology

Speech Therapy

Estate Planning

and much more!

Conference Payment Plan

Payment plan options for conference registration are now closed.

2022 Conference Committee

Conference Chairs – Tam & Dave Aldrup, office@chromosome18.org

Registration

Reduced cost stipend registration and childcare registration closed on June 7, 2022. ALL conference registration will close on July 1, 2022 at 12:00am. No registration will be allowed after this time. There will be NO on-site registration.

This year there will be one registration price for all participants and you have the option to choose a stipend from Chromosome 18 or purchase a ticket at regular price. 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 $350. You are welcome to use the $125 stipend, bringing the conference fee to $225 per participant. For those participants needing supervised care (baby, child, and teen childcare by childcare professionals) you will also find two registration options. You can choose to register these participants with the stipend of $300, reducing your cost to $275 or at the full conference price with childcare fees at $575. Everyone must pre-register online. There will be no on-site registration.

Everyone attending, even children, need to register. People who do not need to register might be, for example, grandparents or others who are coming for the purpose of babysitting your child. They do not need to register if they will NOT:

Attend any sessions (for parents, siblings, or self-advocates)
Eat conference planned group meals
Attend any evening sessions – such as Ladies’ Night, Men’s Night, etc.

They may attend the Starfish Dinner & Dance if they pay for their own seat ($125 each) or as the guest of someone who purchases a Starfish Dinner & Dance Table.

The payment plan and scholarship sign-ups are now closed. We will open both up following this year’s conference for the 2023 Annual Conference!

**Registration for Men’s Night, Ladies’ Night, Self-Advocate Outings, and Sibling Outings is available has closed. There will be NO on-site registration for activities.**

Merchandise

Shirts, jackets, hats! Brand new 2022 conference merchandise is available for purchase soon! Order your 2022 conference merchandise before it’s too late. You can either order your merch and pick it up at the conference for a FREE shipping rate, or order it to be delivered to your home address for a flat rate shipping fee of $11.

You must order your merchandise by June 7^th to ensure it will arrive in time to wear to the conference, whether you ship to your home or pick it up on-site at the conference.

There will be a very limited supply of the 2022 conference merchandise available for purchase in person. We HIGHLY suggest you place your orders ahead of time.

Orders for the 2022 Conference Merchandise have closed

Silent Auction Donations

Do you want to help fundraise to support the conference and chromosome 18 research? Consider donating to the silent auction! We are now accepting Silent Auction donations. Simply fill out the form online to let us know what you are donating and then bring the item in person or ship it to the conference – it’s that easy! All proceeds go to the Chromosome 18 Registry & Research Society and receipts will be available for your tax records. Thank you to those who have already notified us of their generous silent auction donations. We are thrilled to feature your items at our silent auction on that last evening of the conference!

Volunteer

Whether this is your first conference or you are a conference veteran, we could use your help to make this year’s conference our best one yet! There are a variety of volunteer opportunities over the course of the conference. From registration, photography, and merchandise to organizing the silent auction, there is something for everyone! Are you from the San Antonio area and know individuals who might be interested in volunteering? Feel free to share this information with them as well!

Sign Up to Volunteer has closed

Events

Join Chromosome 18 in San Antonio, TX for an incredible series of evenings out! We have planned fun-filled evenings that will give you a taste of Texas culture and cuisine. Take in the sights of downtown San Antonio and spend time relaxing while enjoying the company of other conference attendees!

**Please Note: Sign-up for 2022 Chromosome 18 27th Annual Conference Events will be separate from Conference Registration this year. Event details are subject to change. Cost for all nights out will be a flat rate of $40 per person.**

All event registration must be completed online, prior to the conference. There will be NO on-site events registration this year.

Registration for Nights Out has closed

2022 Events:

Men’s Night (Beer & BBQ)

Ladies’ Night (Country Dancing & Cocktails)

Siblings’ Night (TBD)

Self-Advocate Night (Dave & Buster’s Game Night)

Unofficial Sunday Outing to Morgan’s Wonderland (details TBD)

Hotel

The conference will be held at the Marriott Rivercenter in downtown San Antonio, TX and rooms are NOW available at a discounted rate of $169 per night (excluding tax). The discounted rate will be available until mid-June 2019, subject to availability, so please book your room in advance.

Families often comment that staying in the same hotel as the conference, and with the other families, is critical for the full “Conference Experience.” Staying at the Marriott means that you’ll be right in the middle of all the conference action, as well as have walking access to some San Antonio landmarks, like the Riverwalk! Please reserve your accommodations early. Once the Chromosome 18 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!

Parking on site at the Marriott is $39 for self-park, $49 for valet per night. There is a nearby City lot that offers a $10 daily rate, as well as several economical options for parking in downtown San Antonio walking distance from the hotel.

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

Starfish Dinner & Dance

The conference culminates in the final night gala, the Starfish Dinner & Dance. Everyone will enjoy a wonderful evening that includes a three-course meal, awards presentations, silent and live auctions, and of course lots of dancing as the highlight of a fantastic few days as the conference draws to a close. The Starfish Dinner & Dance will take place on Saturday, July 9th from 5:15pm to 10:30pm.

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 in a separate portal for $125 by clicking here. This is a perfect opportunity for anyone who is not attending the conference to be part of our special event.

Ticket Purchase Has Closed

Starfish Dance Table Sponsorship

Due to an increased demand for the Family Tables, tables reserved after July 1st will NOT include the opportunity to bring in guests from outside the conference. You are welcome to invite guests that are already attending the conference to join your table.

Raise or sponsor at least $1,500, and you’ll be able to pick your choice of table (that seats 10 people) in the ballroom for the Starfish Dinner & Dance! With family table sponsorship, you choose how you would like to be recognized by selecting your table name along with reserved seating. This sponsorship allows you to have up to 9 guests join you for the evening at no additional cost. The guests could include those who are not attending the conference and who would like to attend the Starfish Dinner & Dance; they would not need to pay the ticket fee of $125 per person if you have sponsored a table. You can also invite families from the conference to join you at your table!

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? With a family table sponsorship, YOU decide…..

Table Sponsorships Have Closed

Research Study Participation

Important Information from the Chromosome 18 Clinical Research Center

Are you interested in enrolling in the research study and contributing to a better understanding of chromosome 18 conditions? You can enroll and complete the process at conference! For those families who are not enrolled in the Chromosome 18 Clinical Research Center, our research center staff will be on-hand to assist you with the enrollment process.

If you are interested in enrolling in person at the conference, or would like more information, please contact Annice Hill at 210-567-5321 or HillA3@uthscsa.edu.

For enrollment, Annice will need:

Signed consent forms (which will be emailed to you before the conference)
A copy of your child’s cytogenetics report (which you can email to Annice)
Blood draw (which can be completed at the conference in a private, pre-scheduled appointment)

The blood draw is the final and most crucial part of enrollment. Once the above three items are complete, you will be enrolled in the study and assigned a study number.

It is very important that the signed consent forms and cytogenetics report are returned to Annice by July 6th, 2022 (before conference begins) so that she may schedule the blood draw.

For more information about in enrolling at the conference, please contact Annice Hill at 210.567.5321 orHillA3@uthscsa.edu.

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 office@chromosome.org or call 210-657-4968

Child Care

Childcare will be provided by a professional service for this year’s Chromosome 18 Decoded. Additionally, 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 childcare activities closer to the date of the conference!

Event Sponsorship

By being part of the 27th Annual Chromosome 18 Decoded, your organization can make a difference to the lives of the amazing children, individuals, and families affected by chromosome 18 abnormalities. View the Chromosome 18 Decoded Corporate Sponsorship Packet now to find out how you can support this important event! Please contact office@chromosome18.orgwith any questions.

Are you an individual or family that would like to support the conference? We have personal sponsorships available as well. Check out the Family Sponsorship Packet here for more information on how you can become a vital supporter of this year’s conference.

2022 Annual Conference