My name is Kian Rose...
and I have Hurler's Syndrome, a rare progressive disease. This website is to let you know all about me, the disease, fundraising efforts for research and the Kian Jordan Rose Charitable Fund.
The Kian Jordan Rose Charitable Fund was established in my name in December 2005. The primary purpose of the Kian Jordan Rose Charitable Fund is to raise money for Hurler's Syndrome Research and raise public awareness about Hurler's Syndrome. This fund is a component of the East Bay Community Foundation, a foundation that connects donors with nonprofit organizations seeking funds to meet critical needs.
It is important that Hurler's research continues so that progress can be made towards saving me and more children's lives. You can support these efforts to find a cure!
Visit Kian's Blog