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The mission - to meet Jennifer Lopez

Everyone please say an extra prayer this evening for Brenda, one of our HPS'ers. She's getting up early to go to a department store where Jennifer Lopez is making an appearance. The first 300 people to buy two bottles of mens' fragrance will get a chance to meet Jennifer Lopez.

Brenda is going with her HPS t-shirt that says, "Fighting for the cure with every breath" and a fist full of literature.

Jennifer Lopez is from New York, but is Puerto Rican. She actually lives in Donna's neighborhood, although we've never been successful contacting her.

I'm sure that celebs like her get requests for help all the time, but I can't help but secretly hope that good old Jennifer is looking for a cause that no one else has taken on and one that would have meaning for her Puerto Rican roots. It could mean the difference for a lot of people fighting Hermansky-Pudlak Syndrome.

So, we'll keep our fingers crossed and we'll say some prayers this evening. We could really use some good news this week.

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