Seeing what the Sanfilippo Children and their families go through is nothing compared to a little mud and a possible sprained ankle.
Maybe I'm crazy, some people have told me that I am. I'm creeping up on the last year in my, eeer, uh (clearing throat) 30's and I wanted to do something I've never done before. And what better reason than to raise awareness and money for one of my favorite little people.
Jonah is an energy filled little boy who loves Pokémon, going to the park and making people laugh. He has Sanfilippo Syndrome (MPSIII). Sanfilippo is an ultra-rare disease with no treatment and no cure. An easy way to explain his disease is to say it is a children's version of Alzeihmers. Children with Sanfilippo start life developing normally and meeting milestones. Eventually, these children will start to regress, losing the ability to speak, walk, and even eat, losing their battle before adulthood. If you would like to learn more about Sanfilippo please visit: http://jonahsjustbegun.org/what-is-sanfilippo/
Jonah's parents started Jonah's Just Begun-Foundation to Cure Sanfilippo (JJB). JJB has funded research that has led the way for a possible treatment. It has been my privilege to work with and for JJB for the past 6 years. Now I'm asking you to support me as I participate in the Tough Mudder Half on July 22nd in Long Island, New York. If you are feeling adventurous I would love to have you on my team, 39 Reasons. If you would like to help from the comfort of your couch, preferably with a frosty beverage, just hit the "Join the Team" button on this page and help me raise money virtually.