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Boston/New England HPS Family Night

The HPS Network will be doing outreach in the Boston area at the end of the month. Come and join us for an HPS Family Night. Here's the info:

When: Friday February 26, , 2010 - 7:00 pm

WHERE: AEGEAN Restaurant
257 Cochituate Road, Route 30 Framingham , MA 01701
http://www.aegeanrestaurants.com/
508-879-8424

RSVP: By 1/22/2010 at 508.395.7523

Additional information: Please Contact Carmen Camacho at 508.395.7523

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