About the Nonprofit
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The 11q Research & Resource Group knows that our strength lies not only in the words we stand by, but most importantly through the actions of our initiatives. Back in 2000, our Non-Profit Organization realized that by working together we could overcome our challenges much more efficiently, and that is why we ultimately decided to launch 11q Research & Resource Group.
Our mission is to provide support and organizational efforts for the parents, as well as friends and family, of all children with 11th chromosome abnormalities, including deletions (monosomy), duplications (trisomy) and translocations. Through networking, cooperation with the research community, and the resulting sharing of information, we will be better able to meet the challenges brought to us as parents, families and friends of 11q children.
Given the rarity of chromosomal disorders, particularly JS, much remains unknown and funding for research is very difficult to obtain. Despite inadequate financial resources, research has come a long way and very much to the credit of the 11q R&R Group’s Chief Medical Advisor, Dr. Paul Grossfeld of UCSD. His work with the scientific research community to identify causes, treatments and the prevention of congenital heart defects, neurocognitive and behavioral problems, and the life-threatening bleeding issues that not only affect children with 11q-, but millions all over.
The 11q Research and Resource Group has no paid employees and all of the board members are volunteers, so 100% of donations will be allocated toward supporting research and funding of conferences that provide families of affected children with the ability to learn more about their syndrome from doctors and professionals from around the world.
