Running For a Cure
My cousins Jon and Jason were born with MPS III which is also known as Sanfilippo Syndrome. The saddest part of this awful disease is that there is currently no treatment or cure. The research still has many tests and regulatory hurdles to be overcome---all of which will require additional funding.
Sanfilippo Syndrome takes children far too soon from their families. Families dealing with this disease cherish every day with their kids because they don't know how long they have. I had the great honor and pleasure of meeting Stuart and Jennifer Siedman after my first Boston, who are the directors of the Sanfilippo Research Foundation (Also known as Ben's Dream) while in Boston this past year for the marathon. Their son Benjamin had Sanfilippo Syndrome just as my cousins do. Sadly, Ben was taken home to be with the Lord this year only a little more than a month shy of his 18th birthday. Ben was lucky to have two Godly parents so active in raising funds and awareness for Sanfilippo Syndrome.
An update on Jon and Jason: They are now 30 and 27 respectively. They moved into a 24/7 assisted living group home last year with 4 other young men with disabilities and are enjoying their new life! For those who aren't familiar with Jon and Jason, they are a true blessing and inspiration! Both boys are very loving, FULL of energy and BIG fans Barney and Disney movies. They love hugs and laughing and will try to hold your hand every chance they get. They are raised by two very loving parents, along with the help of aides, who love these children more than anything. I respect and admire my Aunt Deb and Uncle Rich more than they will ever know for all that they do and stand for. The love they have for Jon and Jason is powerful. Spend two minutes watching them interact!
Now reaching year five of running for a cure, we are sadly still without one. Without a cure, we move a day closer to the sad reality of Sanfillipo syndrome claiming another childs life, far too soon. But with your help we can also be one day closer to curing this terrible illness and allowing these kids to live a normal life and realize thier dreams!
Never give up.
Thank you again for your generosity, support, and for passing this on to others!