Loeys-Dietz Syndrome (LDS) is a genetic disorder of connective tissue that was identified and named in 2005. At that time doctors realized that even though LDS has some features of other connective tissue disorders, it is a distinct disorder. The other disorders that share features with LDS include Marfan syndrome, Ehlers-Danlos syndrome vascular type, and Shprintzen-Goldberg syndrome.
Because connective tissue is found throughout the body, LDS features can occur in the heart; blood vessels; bones; joints; skin; and internal organs such as the intestines, spleen, and uterus. Some LDS features are easy to see. Others features, such as heart and blood vessel problems, need special tests to find them.
The goal of SAACURH 2013 Conference is to raise funds to help fund the research necessary to help find a cure to this newly discovered disease. Not many know of this disease, we here at ECU have personally experienced a loss due to this disease. Because of the lack of awareness we have chosen this philanthropy that so that the race teams that attend SAACURH 2013 will take home knowledge that could inspire many to help fund/find the cure.
For SAACURH 2013 we are asking that each college or university create a fundraiser donate all proceeds to the Loeys-Dietz Foundation website and bring a receipt to the registration table. If your institution cannot donate money to the cause, please create a fundraiser at your institution and bring in proof such as pictures or items created. There are many ways to fundraise money from bake sales car washes to penny wars and trash for cash, there are lots of creative ways for delegations to bond and help raise awareness.
For any questions please contact Philanthropy Chair Brittany Butler at firstname.lastname@example.org.
You may also send in pictures early to email@example.com
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