HPS'ers march in Puerto Rican Day Parade

This event actually happened in June, but I just got some pics for the newsletter and I thought I'd share one here. Some of our families in New York City, led by Liz Diaz, marched in the Puerto Rican Day Parade as a way to do outreach. HPS is very rare, but it does occur in 1 out of every 1,800 births in Puerto Rico. As a result, there are many people with HPS in the Puerto Rican community - and many don't know they have it. We try to do outreach to help families get an accurate diagnosis and be able to do everything they can to stay as healthy as possible.

If anyone lives in the New York area and wants to march in the parade next year, let the Network know. Liz did tell the board that it's not a great event if you're not feeling well. They had to stand on the hot street for most of the morning and into the heat of the afternoon before the parade actually started. It was very tiring. If you plan to go, bring your sun screen!

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Ratner's Cheesecake

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Living on the frontlines

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