Q. What can I expect if I attend Camp Chromosome 18 – Annual Family Summit? Each year we meet in different cities to listen to speakers, discuss concerns and problems, and offer families an opportunity to meet each other. We learn from educators, researchers, 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 the past!

Q. When is Camp Chromosome 18 and how long does it last? Camp Chromosome 18 is typically held in July. This is because some of the East Coast schools don’t get out until the very end of June and many children in other areas go back to school in early to mid-August. We usually, though not always, kick off the Camp with a mixer where you get a chance to meet other families. This gives us a chance to say hello, meet new and old friends, and get excited for the next three days.

Q. Who may attend Camp Chromosome 18? Everyone is invited to attend. This includes parents, their children, extended relatives, friends, and professionals. Many siblings also look forward to attending Camp each year. You do not need to be a member of Chromosome 18 to attend; however, current members are offered a reduced registration fee (stipend) if they need financial help to attend Camp.

Q. What about Covid-19? Chromosome 18 will be following the guidelines recommended by the CDC during the Camp. As we progress through different stages of this global pandemic we will only proceed with the Camp if the Board feels it appropriate and safe to do so. If payment has been received for Registration and Camp must be pushed back to the following year, then any registration paid will be rolled over to the following year or a refund can be requested.

Q. Do I need to be vaccinated for Covid-19? Although we encourage all eligible people to be fully vaccinated against COVID, we will not require any proof of vaccination to attend.

Q. Will daycare be provided? Yes, we have always provided daycare. The Camp Chairs form a committee for events and are responsible for getting volunteers to help with the different events or outings. This is not an easy task, but it is an extremely important one. In addition to the volunteers, we have also contracted with a professional childcare service to run our daycare program. We anticipate a program that attendees will enjoy with many activities to keep them busy and happy. We know from experience that if parents know their children are happy, they can get the most out of the meetings.

Q. How old are the participants in daycare? We generally have children of all ages – from toddlers to 18 – but can also accommodate older participants upon request. We have both typically developing children and our children who are affected with a chromosome 18 condition, in daycare. Registration for childcare DOES include the Teen Room, which CANNOT be used without childcare registration. If you choose the option of Camp registration with childcare, please indicate whether this attendee will be using the Teen Room. 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 an extended family member or caregiver to help. Please note that we cannot and do not provide one-on-one daycare 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 daycare room anytime with their caregiver.

Q. What is included in the price of registration? Chromosome 18 recognizes that our annual Camp is an extremely important educational and networking tool for our organization. Each family is responsible for their hotel room or lodging; it is not part of the registration fee. The registration fee includes the group meal offered at the Starfish Dinner & Dance, other provided meals as specified, 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 Camp. It is our desire to make it possible for as many families wishing to attend the Camp to do so. We always offer a stipend to attendees who are current members. This means that, whatever the total cost is, the attendees cover a portion of it, and Chromosome 18 covers a portion. For example, if it is determined that the total expense per person is $350, the attendee may pay $225, and Chromosome 18 would cover $125. Not everyone chooses to use the stipend because they know it is a Chromosome 18 subsidy. Please note that the stipend is a benefit that is only available to Chromosome 18 members and the amount of the stipend may change yearly.

Q. Can you explain what “stipend” means? Think of the stipend as the choice of paying a much lower registration fee than what the actual costs are for Chromosome 18 to put on Camp. Chromosome 18 does not hand out money to its registrants; the registrant simply pays the lower fee and Chromosome 18 picks up the rest of the cost. Choosing to use the stipend means you are using Chromosome 18 revenue that came from some other sources or kind donors. (However, that revenue does not come out of restricted fundraising dollars which go only to research.)

Q. What topics are included in the sessions? Camp Chromosome 18 does not follow the same format each year. In the past, our Camp Chairs have done a fabulous job making each year 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 Camp. 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 Camp remain consistent from year to year. For example, Genetics 101 and the Research Update will be part of Camp every year. A consistent member favorite is the syndrome breakout sessions. 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 Camp. We learn so much from each other in these sessions. You can visit the website and get a feel for what Camp Chromosome 18 will look like this year. The preliminary schedule is available on our website.

Q. How do I register for Camp Chromosome 18? You can register by going to our website home page and following the links. Remember that registering for membership with Chromosome 18 is not the same as registering for Camp. To receive the Camp stipend, you must be a current member. If you have a question about your membership, you may call or email the office at office@chromosome18.org or 210-657-4968.

Q. Do I have to stay at the same hotel as Camp Chromosome 18? Being together at the same hotel is so important and lends itself to the very purpose of our Camp. The opportunity to spend time with other families with your same lived experience is well worth the money saved, but time lost, in commuting to the hotel from other accommodations. Most people secure their hotel rooms 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 Camp 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. Please register early!

Q. If I am unable to attend the full Camp Chromosome 18, can I pay a reduced registration fee? Chromosome 18 does not adjust the fee for days not attended. The registration fee remains the same whether you attend Camp for one, two, or three days.

Q. May I receive a refund if I am unable to attend Camp Chromosome 18? 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 Camp Chromosome 18? If your infant/toddler will NOT be going to daycare and/or will NOT be eating food provided at Camp, 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 want to socialize with other families in the Camp setting? Yes, she pays. Will she be joining us for any meals? Yes, she pays. Will she be attending any of the sessions? Yes, she pays. Will she join us for the Starfish Dinner & Dance at the close of Camp? She may buy a standalone ticket for this event if it is the only one she will be attending. Not paying a registration fee for an individual present at the hotel and connected to a Chromosome 18 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 Camp.

Q. I am a teacher/therapist/nurse/etc. for a very wonderful child with a chromosome 18 change, and I would love to attend Camp. What is my fee? All professionals are expected to pay the full registration fee as listed on the registration page.

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 www.chromosome18.org or e-mail the Chromosome 18 office at office@chromosome18.org.

Where can I access previous Conference locations and information? HERE.