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Family Medical Conference

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19th Annual World Cockayne Syndrome Family Medical Conference

“We’re Going on a Bear Hunt”

INFORMATION about the CS Family Medical Conference

WELCOME to Share and Care Cockayne Syndrome Network’s annual conference.  We are excited to share a 4-day/3-night family experience with you. You will have the opportunity to meet, connect with and learn from other families, hear speakers discuss topics of interest to our group, and lastly have lots of family fun!  Share and Care Cockayne Syndrome Network will cover one room for 3 nights per registered CS family.  The conference registration is free of charge. You will be responsibible for covering your own travel expenses.

Hotel Check-in Time:  4:00 PM

If you are arriving on Saturday, Oct 6, and your room is not ready, the hotel will be happy to store your baggage until your room is available.  We will also reserve a hospitality room for you if you need a place to relax. Hotel parking is free.

Hotel Check-out Time: 11:00 AM


Each year, our conference consists of medical professionals and researchers, who will provide the latest information on CS research, answer questions, and participate in open panel discussions.  Please continue checking back for updated information speakers as they are confirmed.


A welcome table will be available throughout the day for conference check-in on Saturday, October 6th beginning at 1PM.


Share and Care Cockayne Syndrome Network (SCCS) generously covers most of the conference’s costs for attending families. These costs are outlined below. There is no fee to register or to attend the conference. It is open to all families who have had a child diagnosed with CS or TTD.


SCCS will pay for ONE room per registered CS family for the duration of the conference.  You are responsible to pay the hotel directly for any additional charges accrued during your stay and/or for any additional rooms. Please call Dollywood’s DreamMore Resort & Spa at (800) 365-5996 and reference “SCCS” to reserve your rooms at the discounted rate.

The negotiated room rate of $185/night is availalble for families arriving 2 nights prior to or 2 nights after the conference dates.  

Please register and reserve your room ASAP for we are expecting our room block to fill up quickly.  If you are hesitating for any reason and you would like to speak with someone,  please call Jackie directly at (703) 727-0404. Please send her a text first before calling. The best times to contact Jackie are 8 – 9:30 AM EST and after 4:30PM EST.


SCCS will generously cover (5) meals for our registered CS families during the conference. All meals are served buffet style.  Meals include lunches and dinners. We will have breakfast snacks in the hospitality rooms.

  • SCCS will pay for conference meals for up to four adults per registered family. The four adults may include:  parents, grandparents, siblings 23 or older, and any other relatives and/or non-relatives who are attending to assist a CS child.
  • SCCS will pay for conference meals for all Cockayne Syndrome children and their siblings age 22 years or younger. Any siblings 23 years or older who are attending the conference will be counted as one of the four adults in your group.
  • Any extra (non-sibling) children or adults beyond the adults will incur the following meals urcharge fees.  Please note that children 5 & under eat FREE.
  • Dinner prices: $40 per adult (14y0 + up) and $20 per child (6-13yo)
  • Lunch prices: $25 per adult (14yo + up) and $15 per child (6-13yo)

MEAL SURCHARGES: Payment for meal surcharge(s) has to be received by October 1, 2018. Please make checks payable: Share and Care Cockayne Syndrome Network.  Please contact Jackie Clark at cockaynesyndrome@gmail.com or (703) 727-0404 for any information and/or the total amount due on your meal surcharges.

We assume all participants in your group will be at each meal.  If you know you will not be attending certain meal(s), please let us know in advance by emailing cockaynesyndrome@gmail.com.  All meals are paid for prior to the conference and we want to be good stewards of SCCS funds.

  • Be on the look out  for a “wish” list of conference donation items! It will be sent out in the next few weeks. Please share the list with any of your family or friends who may want to help with conference donations (i.e. sunscreen, toys, crafts, etc).. 


The 2018 SCCS Conference Commitee

Must register by Tuesday, August 28th to attend the 19th Annual World Cockayne Syndrome Family Medical Conference in Pigeon Forge, Tennessee


October 6-9, 2018!