BENEFITING: CURE SANFILIPPO FOUNDATION
EVENT: The Woodlands Marathon 2016
EVENT DATE: Mar 05, 2016
Last year I was pregnant with Tommy and training with a woodlands running group. I ran along side my friend Valerie Byers and we chatted about anything and everything in the wee hours of dawn as we pounded in the miles. It was then that I learned her son Will was in speech therapy and struggling through potty training. I didn’t think much of it, as sometimes that happens with children. Fast forward to months later, I heard a story I couldn’t believe. Valerie had seen a segment on the Today Show where a little girl had a rare and deadly disease. The symptoms were very similar to Will’s. It stopped Valerie in her tracks because she knew in her heart that is what her son had. Call it Mother’s instinct and divine intervention – Valerie was RIGHT. She had her son, Will, tested and the results came back that he has Sanfilippo Syndrome (MPS III). This is a progressive and fatal disease affecting 1 in 70,000 children. Children eventually lose the ability to speak, walk and eat. Most children with Sanfilippo Syndrome will die in their teens. Valerie worked hard to get will into a clinical trial where she is praying for a medical miracle. However, there is a lack of necessary funds for further research to be done. In rare disease, funding from family foundations like Cure Sanfilippo Foundation are essential to developing treatment for children suffering from this deadly disease. So, that’s where WE come in! I’m lacing up my shoes and hitting the pavement once again for The Woodlands Half Marathon March 5th. This time for a sweet little boy that needs a medical miracle. Please consider supporting this cause by donating (it’s a tax write off too!). Let’s change Will’s outcome! Become fueled with WILL Power and donate today!
Here are some FUN options:
1) $1 per Mile = Total of $13
2) $2 per Mile = Total of $26
3) $5 per Mile = Total of $65
4) $10 per Mile = Total of $130
5) Whatever your heart desires
To donate, please visit this link.
OR just call me and I’ll walk you though it
Thank you SO much. Your prayers and/or donations are greatly appreciated.
All donations go directly to Cure Sanfilippo Foundation (Tax ID: 46-4322131), a non-profit 501c3 organization and will be used to fund research and upcoming clinical trials for the treatment of Sanfilippo Syndrome. All donations are tax deductible. For more information on the Cure Sanfilippo Foundation, please visit www.CureSFF.org.