35th Anniversary 2016   

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Thank you to our Sponsor!

Luke O'Brien Foundation


Thursday July 14, 2016 at 3:00 PM EDT
Sunday July 17, 2016 at 1:00 PM EDT

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Embassy Suites Old Town 
1900 Diagonal Road
Alexandria, VA 22314

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SCCS 35th Anniversary    

2016 International Family Medical Conference for Cockayne Syndrome

INFORMATION about the Cockayne Syndrome Family Conference

WELCOME TO A 4-day/3-night opportunity to meet, connect with, and learn from other families, hear speakers discussing topics of interest to our group, and have fun!  As in the past, through our partnership with the Luke O’Brien Foundation, funding is provided for Share & Care Cockayne Syndrome Network to cover 1 room for 3 nights per each attending Share & Care CS family.  Parking is free at the hotel.  The conference has no registration fee, but you must cover your own travel costs to reach the conference location.

Hotel Check-in Time:  3:00pm daily

Please note that if you are arriving on Thursday, 7/14  and your room is not ready, the hotel will be happy to store your baggage for you until your room is available.

Hotel Check-out Time: 11:00am daily

If you need to make special arrangements for checking in early, checking out late or any additional items for the weekend you can indicate this via email to cockaynesyndrome@gmail.com


All attending families will need to come to the on-site registration at Embassy Suites Old Town Alexandria in order to check-in, collect your conference packet & receive your name badges for each family member.  The conference registrations will be held at the following times:

Thursday, July 14:  10:00am—12:00pm


The Share & Care CS Network generously covers most of the conference 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 of children with Cockayne Syndrome.

Hotel Rooms

The Share & Care CS Network will pay for ONE room (including tax) per CS family on Thursday (7/14/2016), Friday (7/15/16) and Saturday (7/16/16) – check out on Sunday (7/17/16).  Any charges for additional or upgraded rooms and/or extra nights will be paid by families, at their own expense.  Please note that booking your hotel room will be made through Share & Care.  After you finish registering to attend the conference, we will add you to our room block and send a confirmation approximately four weeks before the conference.   If you contact the hotel directly, they will not reserve a room for you under our block.  

 All rooms come with two double beds or 1 king size bed with a fold our couch into a queen size bed, 2 TVs mini refrigerator and mini bar sink.  


The Share & Care Cockayne Syndrome Network will generously cover (8) meals for our CS families during the conference weekend. All meals are served buffet style.  Meals include Thursday dinner, Friday breakfast, Friday lunch, Friday dinner, Saturday breakfast, Saturday lunch, Saturday dinner and Sunday breakfast. 

We assume your entire family 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 conference and we want to be good stewards of SCCS funds.

  • Share & Care will pay for conference meals for up to four (4) adults per attending family. Please note that the four (4) adults allowed include:  parents, grandparents, siblings 23 or older, and any other relatives and/or non-relatives who are attending to assist a CS child.
  • Share & Care will pay for conference meals for all Cockayne Syndrome children and their siblings age 22 years or less. Any siblings 23 years or older who are attending the conference will be counted as one of the four (4) adults in your group.
  • Any extra (non-sibling) children or adults beyond the (4) adults, will incur the following meal surcharge fees.  Please note that children 5 & under eat FREE.

Meal Time

Price per Adult

Price per Child

Thursday Dinner  

$30.00 per adult (14 & up)

$11.00 per child (6-13)

Friday Breakfast  

Included with room


Friday Lunch  

$19.00 per adult (14 & up)

$9.50 per child (6-13)

Friday Dinner  

$32.00 per adult (14 & up)

$11.00 per child (6-13)

Saturday Breakfast  

Included with room

Saturday Lunch  

$19.00 per adult (14 & up)

$9.50 per child (6-13)

Saturday Dinner  

$34.00 per adult (14 & up)

$14.00 per child (6-13)

Sunday Breakfast  

Included with room


MEAL SURCHARGES: Payment for the meal surcharge(s) should be mailed by June 15, 2016. Please make checks payable: Embassy Suites.  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.

Please be looking for a "wish" list of conference donation items!   It will be sent out in the next few weeks.  Please share this list with any of your family or friends that may want to help with the conference donations.


The 2016 SCCS Conference Commitee


Register Now for the 35th Anniversary of Share & Care and the 17th International CS Family Conference in Washington DC Metro area Old Town Alexandria Virginia July 14 - 17!


Share & Care Conference Contact: Jackie Clark