Favorite Links
Disease Links
Shwachman-Diamond Syndrome Foundation
This is the organization for Shwachman-Daimond Foundation Links which include, research on the disease, panel of doctors, board of directors and fundraising for research of the disease. It can also tell you where and how to donate bone marrow and support groups online. It is a wonderful group and has been around the longest.
http://www.shwachman-diamond.org/support.htm
Primary Immune Defiencey Disorder results when one or more essentail parts of the immune system is missing or not working properly at birth because of a genetic defect. Since the immue system is tremendously complex, hundreds of things can go wrong during development and sometimes the backup system cannot compenstate for the defects. There are hundreds of these diseases and PIDD is a broad name. We still do not know which one of these hundreds of disorders our kids have. It takes many tests and thousands and thousands of dollars and time to find the exact disease. However, we know IGG works on the kids. We do know that our kids ca't hold vaccinations and thus must recieve IGG for life.
Camp Sunshine is a wonderful Camp located in Lake Sebago Maine and offers a relaxing getaway free of charge with full accomadations complete with indoor pool, mini golf, canoes and paddle boats as well as activities and crafts. The have a wonderful outdoor challenge course in a gorgous setting. It is a Camp offered to any diseases that have a life-threatning disease and offers an oppurtunity for kids to know other kids and families to met with each other as well as a conference meetings supported by the SDSF with a panel of expert doctors. It has been such a blessing to our family and many sessions other than SDS which is every other year are held for other disorders.
THIS IS A SCAM. DO NOT CLICK ON ANYTHING. IT MAY SAY SHOP or RUBBER STAMPS. WE SELL NO PRODUCTS OR SERVICES. SORRY THIS IS A FREE WEBSITE SO SECURITY ISN'T GREAT
