Pennies from Show Low support kids with rare diseases

Community Collects Small Change for Big Difference

By Newell Belnap

On Friday, May 1, Blue Ridge School in Show Low, Ariz., held an assembly with over a thousand people in attendance. They honored all the students battling rare disorders and life-threatening diseases, including cerebral palsy, cystic fibrosis, leukemia and Leigh's disease, as well as a few kids that are still without a diagnosis.

We have been blessed to find the most amazing physician and researcher who has connected us with TGen.  Dr. Narayanan is the medical director for TGen's Center for Rare Childhood Disorders.  They have one purpose: to help children with rare genetic medical disorders.  You get referred to TGen after every other doctor has failed to find a diagnosis.  TGen is amazing and has given our family a precious gift: answers about why my children are sick.  TGen scientists have not stopped at the diagnosis. The scientists are currently doing amazing research that has the potential to save their lives.

Because of this gift, my wife and I started The Belnap Foundation.  For so many years, we did not have answers. We were lost and without hope.  This is a lonely, dark place to be.  We created our foundation for the purpose of helping other families find answers. In the United States, 1 in 150 children suffer from some type of a rare genetic disease.  On average, it takes almost eight years for these children to find a diagnosis.  95 percent of these diseases have no treatment.  The Belnap Foundation was created to help change these devastating statistics.

Our foundation has had two major events at Blue Ridge School where my children attend. We highlight the students with a rare childhood disorder and then conduct a week-long "Penny War."  Proceeds from this fundraiser are donated to TGen's Center for Rare Childhood Disorders.  Last year, we raised $12,000 and were able to help a local family who had essentially given up.  Their daughter had an unknown rare disease and no one could figure it out.  We connected this family with TGen, and now they have answers.

This year, the Penny War raised over $10,000 for rare childhood disorders.

Written by Newell Belnap at 00:00

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