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Cockayne Syndrome Conference:  Guidelines on who is eligible to attend

 

January 26, 2012

 

 

Dear Parents:

 

Share & Care Cockayne Syndrome Network is proud to have hosted 13 International Family Conferences for Cockayne Syndrome — providing an exciting weekend of fun and friendship for children worldwide diagnosed with this unique aging disease (CS) while also providing CS research presentations from doctors from Harvard, Children’s Hospital, and National Institutes for Health (NIH). 

 

In order to continue providing top-notch programs for all children suffering with Cockayne syndrome and their families at no-cost, we will be making some changes on the registration process and setting some basic policies and guidelines.  Due to the growth of the event any additional guests traveling with a family will be required to pay a fee to attend meals and events with the group.  Questions should be communicated directly to us for board consideration by contacting us via email address: cockaynesyndrome@gmail.com or telephone 703-727-0404. 

 

 

Policies and Guidelines:

 

1 Room per family (3-nights) – Share and Care provides one hotel room per family.  Rooms will usually consist of being:  2-Room Suite (Living room and bedroom with two double beds or a King bed; in addition to a couch that folds out into a Queen size bed in the living room).

 

The CS child or individual must be diagnosed or suspected of having CS by Share & Cares medical advisors.  Each family will be required to obtain a onetime approval.

 

The family must include one biological parent or possess legal guardianship of child with CS.  Siblings under 18 years of age, as well as adult siblings of an individual living with CS who are providing assistance, are included.  The immediate family will be limited to 5 people.  Additional family members will be charged a reduced fee of $100 for kids under 12 or $150 for individuals over 12.

 

Bereaved parents of a CS Child and siblings under 18 years old are welcome to continue attending the Share & Care International Family Conference, however you must attend the speaker events or be volunteering (to maintain visible participation) at the conference.  If Share & Care leadership (President and Vice President) believe a family is not participating in the conference in good faith, they will not be permitted to attend future events.  We hope you will come and volunteer during the conference and year round!

 

Guests:  We are no longer able to afford to pay for extended family and friends (i.e.  Nieces, aunts, grandchildren, friends, etc…).  For each individual Guest there will be a $300 dollar fee to be paid by the registration deadline.  If a paying guest attends an event, they will need to understand and agree the children with CS and their parents and siblings are our priority.  Due to certain constraints such as allotted time, some activities during an event may only be for the families.

 

If a guest lives locally and wants to attend a dinner or lunch or activity they must register and pay two weeks in advance of the conference if space is unavailable the check or payment will be returned.

 

Share & Care is sorry for the inconvenience for the change but the money for the retreat needs to be used for reasonably suspected CS families. We must follow the intent the money has been donated for CS families and research.  We appreciate the understanding and support of those children with Cockayne syndrome and families who have benefited through the generosity of Share & Care’s CS Network over the years.

 

Sincerely,

 

Board of Directors:  Mark Pelson, Andrea Penney, Tim Carroll, and Jackie Clark

 

Share & Care Cockayne Syndrome Network

 

September 01, 2014