EVENT DATE: May 05, 2013
Jonny Lee Miller, lead actor in the new hit show Elementary, will represent Jonah's Just Begun this May 4th and 5th when he runs the North Face® Endurance Challenge in Bear Mountain, NY. Jonny's effort will raise money and awareness for Jonah's Just Begun - Foundation to Cure Sanfilippo Inc.
You can sponsor Jonny in his his race to find a cure for Jonah and friends by making a donation here on crowdrise. Simply click the orange "Donate" button at right.
Jonny has set an ambitious fundraising goal of $160,000. Last year he raised nearly $16,000 for another charitable organization before his event, the New York City Marathon, was cancelled. This year, the show will definitely go on...and we are aiming to increase our fundraising ten-fold!
Jonny became involved in helping Jonah’s Just Begun (Foundation to Cure Sanfilippo Inc.) after learning that one of his co-workers - Jeremy, a camerman for Elementary - had a son with an extremely rare and fatal genetic disease. Having a son the same age as Jonah, Jonny felt compelled to do something to help.
That rare disease is called Sanfilippo Type C. It is a fatal disease, for which there is no treatment, that is caused by a defect in a single cell. It is an inherited disease of metabolism. This means that the body cannot properly break down long chains of sugar molecules called mucopolysaccharides or glycosaminoglycans (aka GAGs). Sanfilippo syndrome belongs to a group of diseases called mucopolysaccharidoses (MPS). Specifically, it is known as MPS III.
Sanfilippo Syndrome occurs when the enzymes the body needs to break down Heparan Sulfate (HS) are absent or are defective. When HS is not broken down, the body does not release it. Instead, it is stored inside the lysosomes of every cell in the body. There are 4 versions of Sanfilippo, designated Sanfilippo A, B, C and D. Type C is the most rare. It occurs in 1 in 1.4 million live births.
Sanfilippo is an insidious disease that often goes undetected for years. Most children are born with no visible signs that anything is wrong. It’s not until the preschool years that children start to show delays or deformities; even then, the disease is often misdiagnosed. Highly specialized and focused testing must be done in order to diagnose Sanfilippo. Research must be conducted in order to find a cure.
That is the intention behind Jonny's run - to raise the funds needed to finance the research that will lead to a cure. Help Jonny and Jonah's Just Begun in this endeavor by contributing to our cause. No amount is too small. No kindness too little. We appreciate it and thank you for your support!