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Looking for something to do this weekend? If you're near Springfield, Mass.....



Contact: Sara McGillicuddy, (413) 783-5448 or by email smcgill3@comcast.net.
Donna Appell, President, HPS Network, (516) 922-3440.
Date: April 10, 2008
FOR IMMEDIATE RELEASE
Falcons show heart by promoting awareness of rare genetic syndrome
Springfield, Mass – The Falcons are teaming up with the Hermansky-Pudlak Syndrome Network to help promote awareness about a rare genetic syndrome affecting several local families. Hermansky-Pudlak Syndrome is a rare type of albinism that causes a visual impairment and bleeding disorder that can vary from mild to life threatening. Some genetic mutations also involve other health issues such as digestive problems and pulmonary fibrosis or a scarring of the lungs.

While many people with HPS don’t live beyond their 40s, there are a number of exciting treatments currently in clinical trials at the National Institutes of Health. But because the syndrome is so rare, many are unaware they are affected and thus cannot take advantage of these research developments. “It’s our hope that this event will help generate awareness of HPS in the greater Massachusetts area so that affected families can get the help they need early,” said Donna Appell, President of the HPS Network.

The event is being organized by Chad and Sara McGillicuddy, whose seven-year-old daughter is affected by the syndrome. “We need to raise money and build awareness of this syndrome so that one day our daughter, and others with HPS, will have better treatments and one day a cure,” said Sara McGillicuddy.

In response the Falcons are hosting HPS Awareness Night at the March 15th game against the Worcester Sharks. The adult league team Haluch Landscaping and the BayState Boilers will play a game before the Falcons/Sharks game in tribute to those with HPS.

A second HPS Awareness Night will be held April 12th. Before the Falcons game, the Barnes Air Force Base and the Westover Air Force Base hockey teams will face off in honor of HPS in the Battle of the Bases! Twenty percent of ticket sales will be donated to the HPS Network. Pre game tickets must be purchased for the April 12th game by April 6th. Tickets cost $10 and can be obtained by contacting Sara McGillicuddy, (413) 783-5448 or by email smcgill3@comcast.net.
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