Cockayne Syndrome (CS) is extremely rare genetic disorder that causes premature aging, sun sensitivity, a shortened lifespan of 4-7 years, & multiple organ failure. Our son Ian passed away in 2003 & daughter Eden passed in 2009 both at 5 years old. Our surprise baby girl Eris was recently diagnosed with this as well.
Funds received from the Butterfly Walks enable SCCS to continue its mission to help children with Cockayne Syndrome and their familes improve their quality of life through support, education and research.
Share & Care CS (SCCS) Network partners with researchers to find treatments to help kids living with CS.
The Butterfly Walk Family Fundraiser has been an essential source of funding for Share & Care CS Network since its start in 2008 and is recognized as the top fundraising event for the organization. Through education, information, research, advocacy and support, your participation in the Buttterfly Walk helps all of us at SCCS take strides toward improving the lives of those impacted by CS. With your help, we are moving closer to powerful treatments and an eventual cure for Cockayne syndrome. We are continually grateful for the support that we receive year after year.
For more information on Cockayne Syndrome Visit: www.cockaynesyndrome.org