Thank you for visiting our fundraiser page!
Our daughter Catelin was diagnosed at birth with Jacobsen’s Syndrome (JS or 11q-), a very rare genetic disorder that is caused by a partial deletion of the long arm of the 11th chromosome. It is extremely overwhelming when you find out that your child has a rare disorder. Even more so, when you find out she is the only known case in Southern Nevada.
Connecting with Dr. Paul Grossfeld and the 11q Research & Resource Group was a lifeline for us. We were immediately put in contact with doctors from all over the world experienced in 11q disorders and with other families who share similar challenges and struggles.
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 world.
We wish for you to join us once again in our efforts to improve the social and physical well-being of all children living with chromosomal disorders by making a donating to the groundbreaking research of Dr. Paul Grossfeld.
The donation process is fast, easy and secure, and you can be sure that it will benefit a great cause.