Michael Bendok, 16, of Maricopa, Arizona, a junior at Phoenix Country Day School, leads an effort that has raised more than $141,000 to find treatments for rare diseases that are often overlooked and underfunded because they affect relatively small numbers of people. When he moved to Arizona four years ago, Michael met a boy at school who had to drag an oxygen tank behind him because of a rare lung disease. Coincidentally, Michael’s best friend’s brother, Harry, also had a rare lung disease, and Michael himself was diagnosed with a rare blood disorder when he was younger. All of this made Michael acutely aware of the scarcity of treatments available to people with rare diseases. “Considering the fact that 25 million people currently suffer from one of 7,000 documented rare diseases in the United States, I found the lack of treatment available for patients abysmal,” he said.
Fortunately, Michael outgrew his condition, and Harry’s life was saved thanks to research by the Translational Genomics Research Institute’s Center for Rare Childhood Disorders. “But other kids are not as lucky as Harry and me,” Michael said. So with the help of three friends, Michael founded “Kidz 4 Causes,” a nonprofit that raises funds to help pay for genetic testing at the Center for Rare Childhood Disorders, the first step toward finding effective treatments. In four years, Michael’s team has organized four coin drives, four community runs, three restaurant fundraisers and eight school presentations. The money raised by these activities helps pay for genetic testing for kids whose families cannot afford the full cost. So far, Michael has been told that his efforts have helped more than 20 families find treatments for their children.