Kidz for Causes is the 2015 brainchild of four current 11th grade boys that wanted to make a difference in their community. For their initial efforts, we partnered with the Translational Genomics Research Institute (TGen) and its Center for Rare Childhood Disorders.
Harry is a current 8th-grade boy in our community who developed a rare and irremediable lung disease called Obliterative Bronchiolitis a few years ago. This disease left him with just 27% lung capacity and with permanent scar tissue in his lungs. Despite these setbacks, Harry's joyous spirit keeps him smiling. However, there are currently no FDA-approved drug treatments for Harry's disease.
Harry is not alone. There are over 7,000 different rare diseases, affecting more than 30 million Americans. Think about that number for a second; that's nearly 1 in 10 Americans! And these diseases are far from benign; most children with rare diseases don’t live to see their 5th birthday. But because each individual rare disease, by definition, only affects 200,000 Americans at any given time, rare diseases have a hard time competing for research dollars. As a result, 95% of rare diseases have no FDA approved vaccine.
Harry's story along with these statistics is what inspired us, Michael Bendok, Xander Black, Matthew Linhart, and Samuel Steiner, to start our charity. We hold numerous events throughout the year, including coin drives, restaurant fundraisers, and run/walks. Over the last three years combined, we have raised over $141,000. In the long term, we plan to continue our efforts throughout high school —and even beyond—to raise money and awareness for rare disease research.