On Jan. 24, more than 320 people attended the Cystinosis Research Network's 1st Annual Dinner Dance at the Milleridge Cottage in Jericho. Dubbed "Miracles at Milleridge" by its organizer Marybeth Krummenacker of Hicksville, the dinner dance raised $15,000, which will benefit the Cystinosis Research Network (CRN) and its ongoing efforts toward finding a cure for this rare metabolic disease.

"The event was an overwhelming success," said Krummenacker, whose daughter, Laura, was diagnosed with cystinosis when she was just 2 years old. "I feel so blessed to have had such a network of family and friends there to support the cause."

Cystinosis is a disease caused by two parents who both carry one defective gene and one normal gene. The recessive gene may lie dormant for many generations until the two people with the defective gene have children and pass the defective gene on to their child. Parents are unaware they are carriers of the defective gene until they pass it on and their child starts to demonstrate symptoms around 18 months to 2 years old.

Currently, only about 2,000 individuals worldwide have been diagnosed with cystinosis, with only about 500 confirmed cases in the United States. Due to the lack of awareness and education within the medical community, exact numbers are unknown because the disease is often undiagnosed and many children die before they are diagnosed.

According to Krummenacker, a co-founder and current vice president of education/awareness for CRN, the network is an all-volunteer, non-profit organization based in Burlington, MA. It was established in 1996 by parents of children with the disease. CRN is dedicated to finding a cure for cystinosis while improving the lives of those affected through education, research and support.

Donations for helping to find a cure for cystinosis are still being accepted and can be mailed to Marybeth Krummenacker, 54 Smith Street, Hicksville, NY 11801; 931-6785. For additional information on cystinosis, visit www.cystinosis.org or call toll-free 1-866-276-3669.