We lost our daughter Carmen to this cruel condition on October 30, 2007 and feel her loss every day. She was a beautiful child who grew to be a bright, wonderful, funny woman with a charming personality and insight into life that many "healthy" people lack. It's safe to say that she was as rare as the disease took her from us. Carmen was only 34 years old. Years later we find courage in those who struggle still, as well as those fighting for a cure through research and education. And we think that Carmen would be proud.

We appreciate any support you can give; money, memory, a moment of thought for those less fortunate. Carmen's memory is kept alive by her son and extended family and friends whose constant support is much appreciated. 

You can help my selecting the Donate Now button on the right. Donating through this site is the most efficient way to make a contribution. It's simple, fast and totally secure.
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"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."