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Thursday July 27, 2017 at 3:00 PM EDT
Sunday July 30, 2017 at 12:00 PM EDT

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Embassy Suites Riverfront Promenade 
100 Capitol Mall
Sacramento, CA 95814


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Jackie Clark



Embassy Suites Riverside


Bring your swimsuit!



Star Wars theme night - Welcome new friends and old, sharing and caring for over 30 Years!  

May the Force Be With You!


FRIDAY July 28

California Gold Rush Day! Wear jeans and flannel with your SCCS t-shirt or wear some gold.  

-  Meet medical experts and have the unique opportunity to talk with them one-on-one to ask questions.  They are not just knowledgeable but compassionate.

 Stay inthe know by hearing latest research discoveries for Cockayne syndrome.  

 -Join us as we fill the air with music and hundreds of live butterflies to celebrate the life and love of CS children around the world.

- Come and have fun in the California Capital & Gold Rush!


Pirate (and mermaid) night


- Meet other families who have lived the experience of having a child with Cockayne syndrome.  Kids with CS and their parents and siblings, have an immediate bond, it's an incredible experience to share your story and listen to others and to see so many beautiful children with CS.  You will also learn about current therapies and discover ways to cope with emotional challenges of Cockayne syndrome.

SUNDAY July 30th

How Lucky I am to have something that makes saying goodbye so hard.  -- Winnie the Pooh

July 27 - 30 2017

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2017 International Family Medical Conference for

Cockayne Syndrome

INFORMATION about the CS Family Medical 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!  Share & Care Cockayne Syndrome Network will cover 1 room for 3 nights per each CS family.  Parking is $24.00 per day.  The conference has no registration fee, but you must cover your own travel costs to reach the conference location.  A complimentary shuttle bus is provided to and from the Sacramento International Airport (SMF) by the Embassy Suites Riverfront Promenade Hotel.

Hotel Check-in Time:  4:00pm daily

Please note that if you are arriving on Thursday, 7/27  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: 12:00pm daily

Each year our conference consists of medical professionals and reseachers who provide the latest information on research for CS and answer questions, we have open panel discussions and presentations.  Some of the speaker sessions this year are listed below, please continue checking back for updated information on more speakers as they are confirmed.

Dr. Edward Neilan, MD, PhD Instructor in Pediatrics, Harvard Medical Staff Physician, Genetics & Metabolism, Boston Children's Hospital

Dr. PJ Brooks, PhD, Health Scientist Administrator, Office of Rare Diseases Research at the National Institute of Health

Dr. Valerie Natale, PhD, Forgotten Diseases Research Foundation


A welcome table will be available throughout the day for conference arrival check-in on Thursday July 27 beginning at 10:00 a.m.


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.

How to Reserve Your Hotel Rooms

The Share & Care CS Network will pay for ONE room (including tax) per CS family on Thursday (7/27/2017), Friday (7/28/17) and Saturday (7/29/17) – check out on Sunday (7/30/17).  Any charges for additional or upgraded rooms and/or extra nights will be paid by families, at their own expense.  

Below is a list of three ways you can use to reserve a suite for your family complete with a private bedroom and a separate living area.  Each spacious two-room suite features a TV in each room, sofa bed, wet bar, refrigerator, microwave, coffeemaker and more:

1.  Go to www.sacramento.embassysuites.com and make a reservation using the group/convention code: SHC

2.   Call +1-916-326-5000 and ask for the Share & Care Cockayne Syndrome Network discount rate.         

3.  Go to our hotel web page address: http://embassysuites.hilton.com/en/es/groups/personalized/S/SACESES-SHC-20170727/index.jhtml?WT.mc_id=POG 

We have reserved mostly 2 room suites with 2 Queen beds and a fold out couch into a Queen bed.  If you must have a room with only a King Bed, you will need to contact us at cockaynesyndrome@gmail.com so we can add you to a list of approved King rooms (they are more expensive and only 10 of them are in our room block).  Please keep in mind that all reservations must be in by: July 6, 2017 rooms will be on a first come first serve basis for our CS Families.  The prices of our negotiated room rate are not gauranteed for extra nights that you might want to book, please check the rate that you will be charge with the hotel directly.  You will not be charged for your room during our conference dates, July 27 check -in through July 30 check-out

Please note we do expect to sell out our room block. Please register asap and reserve your room.  If you are hesitating for any reason that you would like to speak with someone about, please call Jackie directly 703-727-0404 - best time to call is after 4:30 p.m. EST or in the morning between 8 - 9:30 a.m. EST.    


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 30, 2017. 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 2017 SCCS Conference Commitee

Register Now for the 36th Anniversary of Share & Care and the 18th International CS Family Medical Conference in Sacramento, California July 27 - 30!


Jackie Clark