I watched Eva Lapin (link below) tell HER story of how ALD has affected her, and how it robbed her child of life, because of the misdiagnosis of ALD...I can not stress it enough....EARLY DIAGNOSES before any symptoms is KEY. I hope that it will become a mandatory newborn test which is a simple VLCFA (very long chain fatty acid), IT HAS TO HAPPEN NOW!
I AM trying to Twitter as many celebtwitters as possible, because this disease needs the kind of exposure that HOLLYWOOD/MEDIA can give. Hmmm, perhaps I'll come up with my own challenge and see WHO will be the first Well known, influential, person to help save a LIFE, by bringing Adrenoleukodystrophy into the LIMELIGHT!!!
Please take a moment to listen to Eva Lapin, my heart was aching for this Mother who has helped so many, and hasn't stopped bringing awareness to Everyone. It gives me MORE get up and go, and a HOLLA out to my cyberfriend/ald friend Kevin...You have done INCREDIBLE with your Awareness blog! Stay strong my friend.
Here is the link...http://bit.ly/rX62s
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