CFC International Family Conference
DoubleTree by Hilton Seattle Airport Seattle, Washington
July 15 - July 19, 2015
NEW! CFC Family Conference Scholarship Application
Conference Frequently Asked Questions
Q. What can I expect if I attend the CFC International Family Conference?
Every two years we meet in different cities to listen to speakers, meet with researchers and medical
experts, discuss concerns and problems with one another and 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
Q. When is the conference and how long does it last?
The conference is July 15-19, 2015 at the DoubleTree by Hilton Airport, Seattle, Washington. We will hold
a new family conference orientation on Wednesday evening July 15. We also have a Scientific update
session on Sunday July 19, in the morning to hear from some of our medical advisors as to what was
presented at the Saturday Scientific Symposium for the RASopathy meeting with all the scientists from
around the world who have met on CFC, Noonan, Costello, and NF1. This session is an informal meeting
so we are all updated on the latest research. You will also have the opportunity to ask questions.
Q. Who may attend the conference?
Everyone is invited to attend the conference. This includes parents, affected individuals, grandparents,
extended relatives, friends and professionals. Many siblings also look forward to attending the
Q. Will childcare be provided?
Yes, we've always provided professional childcare. This is a considerable cost ($8,000 for 60 slots) but
the staff are insured, dependable and they bring in all the toys and activities. 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. We can only allow CFC
children and their siblings into this program due to space and cost. Space is limited to 60 slots and once
that is filled the childcare program will be closed out. Childcare will cost $40 per child for two full days of
childcare. This is a small donation toward the childcare. We look for sponsorship for the majority of the bill
so the $40 per child fee is a small portion with the majority funded by a generous sponsor.
Q. How old are the children in childcare?
We generally have children of all ages - from toddlers to age 16 (CFC individuals). We have both typically
developing children and our children who are affected with CFC syndrome in childcare. Our childcare
services will combine CFC, and Costello individuals and their siblings as well. Infants are usually with their
parents or extended family members and the adults take turns attending the sessions. Many times
families bring grandparents or other family or friends to help out. Please note that we cannot and do not
provide one-on-one childcare or nursing care. Children under age 12 months are not accepted in the
Q. What about older CFC Individuals who need supervision?
We will have an over age 16 teen and young adult lounge staffed by volunteers. Individuals in the lounge
room will have, movies, games, arts and crafts. The fee to attend the CFC Lounge is $20 to cover all day
on Friday and Saturday.
Q. What is included in the price of registration?
CFC International recognizes that our bi-annual conference is an extremely important educational and
networking tool of our organization. Each family is responsible for their hotel room and parking; it is not a
part of registration. The registration fee includes the group meals offered, the facility for our sessions,
printed materials, audio video costs, and medical staff 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 will continue to do our best to
make it economically feasible for our members to attend. For the first time we will offer a stipend program
to first time attendees who are members. This means that, whatever the total cost is, the attendee cover
a portion of the event such as their childcare.
Due to the generosity of our members and their friends who organize fundraisers or donate during the
year, we are able to put on the conference & medical consult program every two years (At a cost of
approximately $55,000 per conference).
Early Bird Registration fees have been set at $110 per adult, $50 for children ages 6-12; CFC
children and all children 5 and under are free. Payment after April 15 is $180 per adult and $85
per child. Parking has been discounted from $25 per day down to $8 per day and $10 overnight.
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 people secure their hotel room first. We encourage you to do this early. We have secured a set block
of rooms at a reduced rate of $129 per night plus tax. A rollaway bed is also available for a $15 one
time charge during your stay. The Costello group will also be at this conference as well as the Scientific
meeting so there are very few extra rooms to be located. Once the rooms are gone we are not able to
obtain more rooms. We encourage you to reserve your room as soon as possible. Please register with
DoubleTree by Hilton Seattle Airport by calling 1-800-222-8733 or by calling the hotel direct at
1-206-246-8600. You must mention CFC International to obtain the reduced rate.
You can also book on-line at
Q. What is the Meet the Researcher/Expert program and who can attend?
The Meet the Research/Expert day is free of charge to all our registered CFC families who have joined CFC
International through the website JOIN button. There is no fee to JOIN CFC International. This day is on
Thursday, July 16. In the past only new families have been given slots but we have now expanded this
program to all families and you will be able to chose what researchers you would like to meet with
depending on how many slots we have open. This day is extremely busy for the medical teams involved
and we set up folders on each child to be seen by the doctors. Some researchers wish to review the CFC
child’s folders the night before the consult. We set up a medical consult schedule for the conference a full
two months in advance and only have so many slots for that one day. Medical consult spots are reserved
on a first come, first serve basis according to the date we have received your paid in full completed
conference registration form.
Q. What topics are included in the general sessions and workshops?
Our general sessions on Friday tend to give an overview of the syndrome and any new research
updates. The smaller breakout sessions on Saturday are joint workshops shared by CFC and Costello
family members. You can visit the website and get a feel for what the conference will look like this year.
As we get closer 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 (www.cfcsyndrome.org) and finding the
Conference under “News & Events” and then “Conference Information”. The registration form should be
printed out and mailed in with your payment in full or you can register online and pay with a credit card.
No partial payments will be accepted and no holds on medical consult spots are granted until all
paperwork with payment is received. We hope to have the registration available after January 1, 2015.
Q. If I am unable to attend the full conference, can I pay a reduced registration fee?
CFC International 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?
Cancellations received one month or more prior to the conference will be refunded less a $25
administration fee per registration. No refunds will be given two week or less before the conference event.
Refunds will be mailed after the conference and may take up to six weeks to process.
Q. A caregiver is coming to watch our kids. Does she pay the registration fee?
Q. I am a teacher/therapist/researcher interested in CFC etc. and I would love to attend the
conference. What is my fee?
- Does she plan to join us for any meals? Yes, she pays.
- Does she want to sit in on one session? Yes, she pays.
- Will she join us for the social on Thursday evening? Yes, she pays.
- Does she want to socialize with other families in the conference setting? Yes, she pays.
All professionals are expected to pay the full registration fee of $180.
Q. Will I be able to talk to doctors and specialists about my child/child’s condition?
Many of our doctors and specialists are very willing to chat with you about your child, and discuss
general aspects of current research. Please take advantage of this conference time to ask
questions of the world’s most knowledgeable experts on CFC syndrome.
Who do I contact with additional questions?
Please e-mail CFC International at: email@example.com.