Contact

Gloria Ellwanger or Loren McCall-Campbell
The Chromosome 18 Registry & Research Society 
office@chromosome18.org 
(210) 657-4968

Claudia Traa
cjtraa@aol.com
(210) 479-3879 

When

Sunday July 29, 2012 at 12:00 PM CDT
-to-
Wednesday August 1, 2012 at 8:00 PM CDT

Add to my calendar 

Where

Marriott Riverwalk Hotel 
889 East Market Street
San Antonio, TX 78205 

 
Driving Directions 

Is This Your First Conference?

We are excited to meet you in San Antonio!  We invite you to read our "First-Timer Flier"!

Click here to see a tentative schedule of what we are planning.  This schedule may change.  We will be updating as changes occur. 

 

 

 

The 19th Annual Chromosome 18 Registry Family Conference 

Conference Schedules Available for Download!

Conference time is nearly here, and the schedules are nearly finalized! 

Download the schedule of the talks and social events.

Download the schedule for the Kids' Camp!

Download the schedule for the Teen Camp!

Latest Updates

The conference is now only a few weeks away, and we are putting the final touches on the schedule and list of attendees!

Please be aware that registration closes on JULY 15th!

Also, our block of rooms at the Mariott has been sold out.  However, if you are still interested in staying at the conference hotel, please contact Claudia Traa at cjtraa@aol.com or 210-479-3879.  She may know of a cancellation.

Lastly, you can download a copy of the latest schedule here.

We look forward to seeing you all soon!

Welcome!

Hi, Chromosome 18 Family Members!

It’s time to begin the planning process for the 2012 Annual Chromosome 18 Family Conference (our 19th), to be held in the home city of The Registry, beautiful San Antonio, Texas.  Our conference will be held downtown at The Riverwalk Marriott, situated on the famous San Antonio Riverwalk.  The conference will kick off on Sunday night, July 29th, with an evening welcome mixer.  The conference will conclude with a farewell dinner dance on Wednesday evening, August 1st.  You won’t want to miss any part of the conference, so please plan accordingly.

There is so much to do in San Antonio, making it a great family vacation destination.  If you want to take advantage of the sights and activities around San Antonio, we suggest staying a few days either before or after the conference days, since many of these plans require a whole day.  Our city offers historic venues like The Alamo and The Missions in the downtown area.  Six Flags Fiesta Texas and Sea World, which are northwest of downtown, are always popular picks for the whole family.  We can also boast about our great zoo and beautiful San Antonio Botanical Gardens.  We have picturesque phenomena like The Natural Bridge Caverns, dude ranches and many swimming holes to swing into and rivers to tube on. If you happen to be a fan of hot weather, you are in luck!!  Click on this link to learn more about San Antonio attractions. 

We are organizing three fun filled days of activities for the kids and exciting sessions for the adults. There  will be an ice breaker session for our affected children (ages 9-16) as well as a session for our younger siblings (7-13).  There will also be a planned mom’s night out (grandmas, aunts and friends are welcome too) and Dad’s night out (grandpas, uncles and friends, too).

Our conference is sure to be filled with great presentations since the home of The Chromosome 18 Research Center is also here in San Antonio at the University of Texas Health Science Center.  Of course, we will have many of our favorite sessions that appear at every conference such as our sibling panel, young adult panel, Positive Exposure with our good friend Rick Guidotti, research updates, and recognition of our shining stars.  We are also trying to organize a trip to Morgan’s Wonderland.  Click here to learn more about this amazing inclusive, accessible, interactive park geared for fun for people of all abilities. Stay tuned for details on our conference schedule and featured sessions.  Registration for the conference usually opens on-line around April 15th.

We look forward to seeing everyone!

Lodging

Room registration for rooms at the Marriott Riverwalk Hotel where the conference will be held is open now.  The Marriott has given us a reduced rate of $145.00 (single, double, triple, quad). [Rooms are usually $299.00 for single or double.]  Click here to secure your hotel reservations now. So many families have said staying in the same hotel as the conference and with the other families is critical for your "Conference Experience", so please reserve your room early. First come first serve! Hope to see you all in San Antonio!

Transportation from Airport

GO Airport Shuttle, San Antonio International Airport's authorized and single shared- ride shuttle service. Shuttles depart from 7 a.m. to 1:30 a.m. daily to downtown hotels every 15 minutes. Passengers may purchase tickets at the airport's baggage claim area.

Ticket rates are $18.00 per person to downtown hotels or $34.00 for a roundtrip ticket. 
PLEASE NOTE: There is a currently a fuel surcharge of $1.00 each way.

Service to other residential or commercial areas is available and rates vary by zone.
Book online and receive an additional discount. Online rates are $17.00 to downtown hotels and $32.00 for a roundtrip ticket. Make a reservation
Major Credit cards are accepted.
For more information, visit goairportshuttle.com or call 210-281-9900.

Tentative Topics and Sessions

This year’s conference is sure to be filled with great presentations since the home of The Chromosome 18 Research Center.  We are currently pulling together topics and speakers for the conference.  These topics are subject to change.  Stay tuned!  You can see a tentative schedule in the link on the left hand side of this page.

Annual Favorite Sessions:

o    Sibling Panel
o    Young Adult Panel
o    Positive Exposure ~ Rick Guidotti
o    Research Updates
o    Recognition of our shining stars.
o    Syndrome Break-Out Sessions
o    Sibling Program
o    Young Adult Self-Advocate Program
o    Fun Child Care Program with Corporate Kids Events
o    Ladies Night
o    Men’s Night Out

Sessions We Are Working On:

o    Sleep Panel (this will consist of various doctors and professionals addressing many FAQ’s on your child’s sleep patterns & difficulty)
o    Dealing with Difficult Behavior
o    Transition Planning
o    Social Media ~ Making it work for us and our kids
o    Adult Living Options
o    Oral Motor Planning
o    Sensory Integration
o    Recognizing Depression in Children
o    Play Therapy
o    Sensory Integration
o    Recognizing Depression in Children
o    Play Therapy
o    Tips, Tricks & Resources (these sessions are our attempt at a "speed dating" type model of information gathering.  Each session will be a brief 15 minute introduction to a topic.  You will learn what the topic includes, and where to go and who to talk to if you decide you want to learn more about that topic in the future.)

We are planning a trip to Morgan’s Wonderland.  Click here to learn more about this amazing inclusive, accessible, interactive park geared for fun for people of all abilities. Stay tuned for details on our conference schedule and featured sessions.

Childcare

Corporate Kids will be providing the childcare for this year's conference.  We will be having a hang out space for kids (age 13 and up) that will be supervised by Corporate Kids.  In addition to the regular childcare areas, there will be a supervised hang-out space for teens and young adults (age 13 and up).  It will be a place where the kids can sign themselves in and out (with their parents' permission).

There will also be a time when the affected kids ages 9-16 will be pulled out of daycare for special "ice breaker activities" as well as another time where the sibs (ages 6-12) will be pulled out of daycare for their own "ice breaker" activities.

FAQ's

Q. What can I expect if I attend the Chromosome 18 Registry Annual Family Conference?
Each year, conference attendees meet in different cities to listen to speakers; discuss concerns and issues; and meet other families. Attendees learn from educators, researchers and medical professionals, and each other. They strive to better understand their children and what they can do to help them. They gain knowledge, perspective and hope. And of course, they also have a lot of fun meeting new friends and catching up with old ones. 
 
Q. When is the conference and how long does it last?
The conference is typically held in July. This is because some of the East Coast kids don’t get out of school until the very end of June. Also, many children in other areas go back to school in early to mid August. Usually, the conference kicks off with a mixer that normally includes light fare and beverages. This gives conference attendees a chance to say hello, meet new and old friends, and get excited and ready for the next three days.
 
Q. Who may attend the conference?
Everyone is invited to attend the conference. This includes parents, their children, extended relatives, friends and professionals. Many siblings also look forward to attending conferences each year.  You do not need to be a member to attend, however, current members are offered a reduced rate (stipend).
 
Q. Will childcare be provided?
Yes, childcare is available. The conference chairs form a committee for childcare and are responsible for getting volunteers to help. This is not an easy task, but it is an extremely important one. In the past several years, the conference has grown so much that there is now a staff composed of paid professionals and volunteers.  There are many activities that keep the children busy and happy.  If parents know their children are happy, they can get the most out of the meetings.
 
Q. How old are the children in childcare?
Generally, there are children of all ages - from toddlers to 18. There are both typically developing children and children who are affected with a chromosome 18 abnormality. Siblings are often helpful and nurturing as they know their brother or sister best. Infants and very young babies are usually with their parents in the session, or the parents take turns attending sessions and taking care of the baby. Many times, families bring grandparent or an aunt or uncle to help out. Please note that we cannot and do not provide one-on-one child care or nursing care. If a child needs to be closely monitored, he/she will come into the sessions with the parents or stay with their relative or caregiver. Of course, they are always welcome in the childcare room with their caregiver.
 
Q. What is included in the price of registration?
The Registry recognizes that our annual conference is an extremely important educational and networking  tool of our organization. Each family is responsible for their hotel room or lodging; it is not a part of registration. The registration fee includes the group meals offered at the opening reception, other provided meals, the facility for our sessions, childcare and related supplies, printed materials, and speaker costs. For many years, we have charged each attendee a very nominal registration fee for the conference. It is our desire to make it possible for as many families wishing to attend the conference to do so. We always offer a stipend to attendees who are members. This means that, whatever the total cost is, the attendees cover a portion of it, and the Registry covers a portion.  For example, if it is determined that the total expense per person is $200.00, the attendee may pay $100.00 and the Registry would cover $100.00. Not everyone chooses to use the stipend because they know it is a Registry subsidy.   Please note that the stipend is a benefit that is only available to those whose Registry membership is active/paid.
 
Q. Can you explain what “stipend” means?
Think of the stipend as the choice of paying a much lower registration fee than it actually costs the Registry to execute the conference. The Registry does not hand out money to its registrants; the registrant simply pays the lower fee and the Registry picks up the rest of the cost. So choosing to use the stipend means you are actually using Registry revenue that came from some other source/kind donor. (However, that revenue does not come out of fundraising dollars which go only to research.)
 
Q. What topics are included in the sessions?
The annual conference does not follow the same format each year. In the past, our conference chairs have done a fabulous job making each conference unique and appealing to as many attendees as possible. Some years the setting is a nice hotel in a large city. Other years have had a more rustic flavor in some sort of a camp setting. The same goes for the content of the conference. Some years there are many choices according to the age or developmental stage of our children. Some years seem to be more sharing and networking. Other years are so full of educational information that attendees leave with pages of notes.
However, some aspects of the conference remain consistent from year to year. For example, Genetics 101 and the Research Update will be part of the conference every year. Rick Guidotti, a former fashion photographer and his organization, Positive Exposure, continue to redefine beauty and capture our children in the brightest light possible. We invite Rick every year, and our conference would not be the same without him. A favorite of all of our members is our syndrome breakout session. This is when families break into groups according to their children’s syndrome and share stories and information. It is an extremely empowering portion of our conference. We learn so much from each other in these sessions.
 
You can visit the website and get a feel for what the conference will look like this year.  As we get close to the date, the schedule and more information about the sessions will become available.
 
Q. How do I register for the conference?
You register for the conference by going to our website home page and following the links. Registration usually opens between April 1st April 16th. Remember that registering for membership in the Registry is not the same as registering for the conference. In order to receive the conference stipend, you must be a current member and know your membership number. If you don’t have computer access or have a question about your membership number, call or email Gloria at the office, and she will assist you.
 
Q. Do I have to stay at the same hotel as the conference?
Being together at the same hotel is so important and lends itself to the very purpose of our conference. Most attendees find that he opportunity to spend time with other families living the same life as you are is well worth the money saved.  Most people secure their hotel room first. We encourage you to do this early. In the past, there have been some very upset members who realized too late there were no more rooms at the host hotel. We encourage you to register for the conference at your earliest convenience. Although it has never happened to date, we cannot guarantee that if we are inundated with attendees that we will not enforce a cut-off. This would mean we have maxed out on numbers that can be accommodated properly. So, please register early!
 
Q. If I am unable to attend the full conference, can I pay a reduced registration fee?
The Registry does not adjust the fee for days not attended.  The registration fee remains the same whether you attend the conference for one, two, or three days.
 
Q. May I receive a refund if I am unable to attend the conference?
Under most circumstances, there will be no refund. When this has happened in the past, most families consider their fee a donation. If the conditions are extremely serious, feel free to contact the office to discuss the issue.
 
Q. Do I register and pay for my infant/toddler that I am bringing to the conference?
If your infant/toddler will NOT be going to daycare and/or will NOT be eating food provided at the conference, it is not necessary to register or pay for them to attend.  However, if they go just once to daycare or eat one meal, then you are expected to pay for them to attend.  You are welcome to bring your infant with you to the sessions; however, please respect others in the group by taking your infant out if he or she is causing a distraction.
 
Q. Grandma/caregiver is coming to watch our kids. Does she pay the registration fee?
Does she plan to join us for meals? Yes, she pays.
Does she want to sit in on one session? Yes, she pays.
Will she join us for the social on opening evening? Yes, she pays.
Does she want to socialize with other families in the conference setting? Yes, she pays.
Not paying a registration fee for an individual present at the hotel and connected to a Registry family would indicate that person is taking care of the children (or vacationing) in an atmosphere that is not in any way a part of the conference.
 
Q. I am a teacher/therapist/nurse/etc. for a very wonderful child with a chromosome 18 condition, and I would love to attend the conference. What is my fee?
All professionals are expected to pay the full registration fee of $200.00.
 
Q. Will I be able to talk to doctors and specialists about my child/child’s condition?
While many of our speakers are professionals in their field and will be very willing to chat with you about your child and discuss general aspects of current research, please remember that this is not a clinical setting and they cannot dispense individual medical care.
 
Q. Who do I contact with additional questions?
Please visit the Registry website or e-mail the Registry office at office@chromosome18.org.