Effort continues to search for answers to rare disease
BY TALI ISRAELI
Staff Writer

MARLBORO - Walk a mile, help a township youngster.

The Zachary Foundation will host its third annual walk/run to raise money and awareness for the incurable mitochondrial disease pyruvate dehydrogenase deficiency.

The 5-kilometer walk and 1-mile walk/run will be held at the Marlboro Recreation Community Center, Wyn-crest Road, on Oct. 22 at 9 a.m.

The Zachary Foundation was organized two years ago by Rhonda and Michael Friedberg, the parents of 8-year-old Zachary, who was diagnosed with the rare genetic disease when he was 3.

According to his parents, Zachary is missing the enzyme that breaks down carbohydrates into usable energy; instead his body turns carbohydrates into poisonous lactic acid which prevents his brain and body from functioning properly.

As a result of his having the disease, Zachary has been on a no-carbohydrate, 90-percent-fat diet for the past three years. Michael said the disease prevents his son from eating some of children's most simple pleasures such as cake on his birthday or candy on Halloween. Although the diet his son must follow will not cure or treat the disease, Michael said it is hopefully a way to prolong his son's life.

Some of the symptoms Zachary experiences as a result of the disease are seizures, lethargy, slow motor and development skills and a learning disability. However, his parents remain hopeful and continue to support an effort for ongoing research of the rare disease.

The Zachary Foundation donates money to different organizations that specialize in researching pyruvate dehydrogenase deficiency.

The money is divided among three places: the Baby Rainbow Hospital in Cleveland, Ohio, where the doctor who founded the gene for the disease conducts his research; a doctor conducting research at the University of Florida; and to the United Mitochondrial Disease Foundation (UMFD) earmarked for Zachary's specific disease.

The preregistration deadline to participate in this year's walk/run is Oct. 13. All pre-registered participants will receive a free T-shirt. Registration on the day of the event will be from 8-9:15 a.m.

There are two ways to participate in the event; sponsorships may be collected, or a donation of $30 for an individual and $100 for a family will be accepted.

Prizes will be awarded to the three people who collect the highest amount of sponsor donations. The grand prize is a DVD player, the first prize is an Apple iPod mini and the second prize is a $50 Target gift card. Runner's awards will also be given.

For more information about participating in the event on Oct. 22 or donating to the Zachary Foundation, visit the Internet Web site www.zacharyfoundation.org.