Q. What can I expect if I attend the Chromosome 18 Registry Annual Family Conference?

Each year we meet in different cities to listen to speakers, discuss concerns and problems with one another and to introduce our families to each other. We learn from educators, researchers and medical professionals and mostly from each other. We strive to better understand our own children and what we can do to help them. We gain knowledge, perspective and hope. We also have a lot of fun, meeting new friends and checking in with old ones from past conferences.

Q. When is the conference and how long does it last?

The conference is typically held in early 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. We usually, though not always, kick-off the conference on a Sunday night with a mixer that normally includes light fare and beverages. This gives us 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.

Q. Will childcare be provided?

Yes, we’ve always provided childcare. The conference chairs form a committee for childcare and are responsible for getting volunteers to help out with the children. This is not an easy task, but it is an extremely important one. In the past several years, we have grown so much that for the 2008 conference we are inaugurating a new feature. We will have a staff of half paid professionals and half volunteers. We anticipate a program that the children will enjoy with many activities to keep them busy and happy. We know personally that if parents know their children are happy, they can get the most out of the meetings.

Q. How old are the children in childcare?

We generally have children of all ages - from toddlers to 18. We have both typically developing children and our children who are affected with a chromosome 18 abnormality in childcare. 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. Many times families bring Grandma or Grandpa 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 anytime with their care-giver.

Q. What is included in the price of registration?

The Registry feels our annual conference is an extremely important educational 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 and the opening reception, 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 whatever the total cost is per person, the attendees cover a small portion, and the Registry covers the greater portion, if the attendee chooses to utilize the stipend. For example, if it is determined that the total expense per person is $160.00, the attendee may pay $60.00 and the Registry would cover $100.00. We have tried over the years not to increase the amount we collect for registration from the families. This amount has been the same for years and is artificially low. Not surprisingly, our expenses have increased greatly over the years, but our registration fee has remained the same. Also, as we explained, we are growing and have had to seek a portion of childcare to be hired professionals. With these things in mind, members can expect the registration fees to increase after this year. That being said, we will always keep in mind that the conference is a critical element of the educational services we provide to our members, and we will do our best to make it economically feasible for our members to attend.

Q. 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 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?

It is important to realize that 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 outbreak 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 and finding the area for Annual Conference under “Service” and then “Registration.” Remember that registering for membership 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. The opportunity to spend time with other families living the same life as you are is well worth the money saved, but time lost, in commuting to the hotel from other accommodations. 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 can not 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. 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. 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 Sunday 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. Of course the easiest and most logical way to address this situation is for this person to be come a member ($20.00) and then pay the $60.00 fee. She gets all the meals and other benefits of the conference for $80.00—the deal of the century!

Q. I am a teacher/therapist/nurse/etc. for a very wonderful child with a chromosome 18 change, and I would love to attend the conference. What is my fee?

All professionals are expected to pay the full registration fee which this year is $160.00.

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.

Who do I contact with additional questions?

Please visit the Registry website or e-mail the Registry office at office@chromosome18.org.