MPS Awareness day….

Here is the scoop. MPS Awareness day is May 15 (Saturday). And, because it falls on a weekend, I am asking we all observe it on Friday at school, work, or whatever your day looks like on Friday in hopes to bring more attention to Sanfilippo. We are encouraging you, and your friends, to
wear purple on Friday
(and Saturday too if you want). We are taking it a step further and having a
PURPLE STREAKING party on Friday
….no, we are not painting ourselves purple and streaking…..although that would bring a whole lot of attention to Sanfilippo! We will be dying our hair with 2 purple streaks to represent Jayden and Brooklyn. Jodelle-our paddleboardin friend thought of the idea and is doing it in Missouri, too. It will be done by two professional hair stylists. The streaks can be as bright and noticeable or hidden and blended as you want. Any hair color welcome!

13215 W. Wadsworth Rd.
Wadsworth, IL
Friday, May 14, 2010
6-10 PM
$5 per streak
all proceeds and any donations will go to
More info:
Carol 847-951-7920 or Heidi 847-721-5541
Under 18 must have parent consent
I also want to include some educational information so when you are telling people why you are wearing purple-you can explain it….Here is a general “script”… hope this helps.
Today is MPS Awareness day. MPS is a genetic disorder that effects about 1 in 25,000 children. Very basically, cells can’t recycle a particular “sugar” like our bodies can and sugar builds up in every cell in a child’s body causing the body to slowly stop functioning. Children are born normal and over time, they slowly loose any of the skills they gained. Most children don’t make it past their teenage years because currently, there is no treatment or cure–mostly due to lack of funding for research. There are different types of MPS and I am wearing purple today in support of two kids I know with Sanfilippo, which is type 3 (MPSIIIA). But the family, and I, are hopeful that there will be treatment options or a cure in the future….we also believe that God’s in control and that Jayden and Brooklyn’s life is special-whatever the future brings. If you want more information about it or want to get involved, go to
If you want more detailed info, you can also visit