FAQ
Q. What can I expect if I attend the Chromosome 18 Annual Family Conference? Expect to have a fun-filled few days where you will meet other chromosome 18 families from around the country and the world who are on different parts of their journeys. Each year we meet in different cities around the U.S (and sometimes Canada) to listen to speakers and medical experts, discuss and share lived experiences, 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 children and loved ones living with chromosome 18 conditions and how we can better support them reaching their full potential. We gain knowledge, perspective, and hope. Most importantly, we have a lot of fun meeting new friends and checking in with old ones from the past!
Q. When is the Chromosome 18 Conference and how long does it last? Conference is typically held in July each year and lasts for 3 days. It always starts with a welcome mixer the night before the full first day, with check-in the same afternoon. This half-day welcome gives us a chance to meet families, say hello, discover new connections, visit with old friends, and get excited for the next three days.
Q. Who may attend the Chromosome 18 Conference? The whole family is invited to attend! This includes parents, children, siblings, caregivers, grandparents, extended relatives, friends, and professionals. Many chromosome 18 self-advocates and siblings look forward to attending Conference each year – they have their own special tracks where they learn and have fun together, making friendships and memories that will last a lifetime You do need to be a member of the Chromosome 18 Registry to attend, however you are NOT required to participate in the research study to join Conference. Joining the Chromosome 18 Registry is free and easy – it just takes 5 minutes to answer a few questions and get connected to the Chromosome 18 community. BECOME A MEMBER
Q. Will daycare be provided? In past years, the Registry has contracted with a private daycare company to provide professional daycare services during Conference. However, due to the exorbitant cost and severely diminished used of these services by parents last year, there will not be any professional daycare services at this year’s Conference.
As this is a marked change from previous years, we understand and expect that some parents will have to bring their children into some sessions and ask them to sit quietly. If it is an option for you, we recommend coordinating with your partner, grandparents, or other family or friends that might be able to come along to Conference to provide care for your child while you attend sessions.
Q. How old are the participants in the different tracks – daycare/sitter rooms, Sibling Room and Self-Advocate Room? The care available this year will be available for children or adults in need of supervision across all age ranges, however parents must coordinate with staff directly on-site to ensure they have the capacity to provide care for their children. 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.
The Sibling Room is run by our Sibling Coordinator, Kendall Powell. Kendall typically runs this fun and educational activity track with the help of other siblings. The Sibling Room is comparable to a classroom or summer-camp style space with chats, activities, and education for chromosome 18 sibs – it is not daycare. In general, the sibling track is intended for children approximately ages 13 and up through adults who can function independently in a classroom or summer camp-style environment and do not need supervision from a dedicated caregiver. However, there will be some “all ages” sessions in the Sibling Room that are open to siblings of all ages, and sibs under 13 years old are welcome to join these sessions. Be sure to check the tentative schedule when it is posted as the Sibling Room will have minimum ages listed for each session.
The Self-Advocate Room is run by volunteers (typically parents) who agree to coordinate activities for independent and adult self-advocates during Conference. As there are only as few volunteers to supervise and coordinate a large group of self-advocates, this room is usually intended for children and adults ages 14 and up who can function independently without direct supervision in a classroom or group environment. All self-advocates ages 14+ are invited to join the Self-Advocate activities, however those requiring one-on-one supervision must be accompanied by a parent or caregiver. There might be volunteer help available for self-advocates in need of one-on-one supervision whose parents/caregivers want to partake in the educational sessions – please reach out to office@chromosome18.org if you would be in need of volunteer help in order for your self-advocate to join the room.
Q. What is included in the price of registration? Chromosome 18 recognizes that our Annual Conference is an extremely important educational and networking event. Each family is responsible for their hotel room or lodging – this 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, and related supplies, printed materials, and speaker costs. For many years, we have charged each attendee a very nominal registration fee for 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 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 $400.00 USD, the attendee may pay the offered stipend price of $250.00 USD, and Chromosome 18 would cover $150.00 USD. 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. This stipend price closes June 13th.
**This year, we are pleased to announce that there will be a special flat rate for families who will be attending the Conference for the first time – $100 USD/$145 CAD per person for first-time families. This first-time rate is to encourage new families to join in this special event and ensure that it is accessible to everyone.
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 the Chromosome 18 Registry to put on Conference. Chromosome 18 provides financial support to registrants in the form of a stipend; the registrant simply pays the lower fee and Chromosome 18 supplies the grant. Choosing to use the stipend means you are using Chromosome 18 revenue that came from fundraising through the year or our generous donors (However, that revenue does not come out of restricted fundraising dollars directed to support the research).
Q. What topics are included in the sessions? The Conference does not follow the same format each year. In the past, our Conference 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 a camp setting. The same goes for the content of 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 Conference remain consistent from year to year. For example, Genetics 101 and the Research Update will be part of Conference every year. A consistent member favorite are the syndrome breakout sessions, 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.
Q. How do I register for the Chromosome 18 Conference? Registration typically opens Spring before Conference. 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 Conference – you must be a member of the Registry to join Conference. Registry membership is free and easy, and only takes 5 minutes to sign up. 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 the Chromosome 18 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 with the 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 room first. We strongly encourage you to register for Conference at your earliest convenience. As we only have a limited number of rooms in the Chromosome 18 block.
Q. If I am unable to attend the full Chromosome 18 Conference, 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 Conference for one, two, or three days.
Q: How do I pay the registration fees for Conference? Do I have to pay all at once? How much does it cost? While in the past we have offered an option to “Pay by Check/Pay in Person” for Conference registration, this option is no longer available. All Conference registration must be paid for at the time you complete your online registration. There will be payment plans available for those that want to divide up the payments over the months leading up to Conference, with the final payment required before Conference begins. Please reach out to office@chromosome18.org if you are interested in setting up a payment plan. Registration costs for Conference this year are as follows:
- First time attendees – $100 USD/$145 CAD per person
- Single registration with stipend – $250 USD/$350 CAD
- Single registration at full cost – $400 USD/$570 CAD
Q. May I receive a refund if I am unable to attend the Conference? Under most circumstances, no refunds are available. If the conditions are extremely serious, feel free to contact the office to discuss the issue: office@chromosome18.org.
Q. Do I register and pay for my infant/toddler that I am bringing to the Conference? If your infant/toddler will NOT be eating food provided at Conference, it is not necessary to register or 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. A Grandparent/caregiver is coming to watch our kids. Do they pay the registration fee?
- Do they want to socialize with other families in the Conference setting? Yes, they
- Will they be joining us for any meals? Yes, they need to pay the registration fee.
- Will they be attending any of the sessions? Yes, they need to pay the registration fee.
- Will they join us for the Starfish Dinner & Dance at the close of Conference? They may buy a standalone ticket for this event if it is the only part of Conference 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 Conference.
Q: I am a teacher/therapist/nurse etc. to a wonderful child with a chromosome 18 condition and I would love to attend Conference, 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.
Q: Who do I contact with additional questions? Please visit www.chromosome18.org or e-mail the Chromosome 18 office at office@chromosome18.org.
Q: Where can I access previous Conference locations and information? HERE.