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June 30, 2006




Brighid Moret

Every time I google my name, I find that Jimmy has kept my name and PXE current on his blog and it pops near the top of the list. I can't thank those involved in this effort enough. The money that was raised by the shindig group covered 5% of the remaining costs that PXE needed to raise for the NIH study. Sharron Terry, the director of PXE International, contacted me after Jimmy sent his letter and your contribution to express her gratitude. With only about 3000 registered members of PXE International, it can be difficult to raise the large funds that are needed for sophisticated medical studies that are needed to find treatments for this unique disorder. right now much of the research is going toward eye treatments to help prevent the blindness that effects 50% of PXE patients. Hopefully, one day the research can lead to either an ensyme replacement treatment or one that induced the body to produce the chemicals that are lacking in PXE patients.

Once again, I would like to thank everyone from the bottom of my heart. I was truely stunned by the generosity of strangers and your effots truely touched me.

I cannot thank you enough,

Brighid Moret

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