Countdown to Leukodystrophies Awareness Month

Lilypie Countdown to Adoption tickers

ALD/AMN Warriors

Wednesday, December 28, 2011

Tuesday, December 20, 2011

Merry Christmas !!

Families , I just wanted to stop by and wish you all a very Merry Christmas and a Blessed New Year!!
I have a new shipment of Awareness Braceletts arriving at the beginning of the year , please stop by and check them out.They are only a dolloar! Thanks to all of you we raised $255.45 in my Zazzle store. The money has been donated to FIGHT ALD at Together we ARE making a difference! I would like to get our schools involved in some sort of Awareness walk for the month of May. After the newyear , I will be talking with my childrens school about this idea.I was thinking you other families could talk to your childs school also. I would like to have the walk around Lorenzo   Odone birthday May 29. I think this would be a great way to honor and remember Lorenzo and all the work his family did to raise Awareness and Not Give up Hope for a Cure. I'll keep you all updated once I have the details hammered out. Once again , Merry Christmas to each and all of you !!
~ Darlene

Tuesday, May 10, 2011


I need YOUR help !!! Please take your aluminum cans, scraps , tin cans , steel , iron to Bedford Metal, or Girard Recycling  for my ULF Fundraiser . Your participation can help make a difference! I also encourage you to collect them from friends and neighbors. With your involvement, this recycling effort will be an extremely rewarding experience, and support a very worthy cause. Thanks for taking the time to help. %100 PROCEEDS GO TO ULF!!

Monday, April 11, 2011

The Umpire's Sons

The Umpire's Sons

How do you survive the death of a child? How do you go on knowing another child shares the same genetic disease? When you've traveled umpire John Hirschbeck's journey, being spit upon is just a footnote.

The Umpire's Sons


Put a Little LoVe in your heart!!

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