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Getting in the Christmas spirit Hermansky-Pudlak Syndrome style

Let me tell you a little Christmas story. Several years ago there was a musical group on Long Island in New York called Three’s Harmony. (Today they are known as “J”). Somehow (I don’t know the whole back story) they became interested in Hermansky-Pudlak Syndrome. It wasn’t because they had an affected family member. It was because somehow they became aware of us, and they cared.

The group began holding annual Christmas benefit concerts for the HPS Network at Ashley’s high school. Every year the concerts grew (as did the Network). Last year I think the event generated about $10,000 for the HPS Network, one of our largest fundraisers of the year.

Last year the group “J” did something even more amazing for us. They gave us a CD. The CD is roughly half covers of traditional Christmas favorites, and half original compositions. Not only did “J” donate their time and talent, but 100 percent of the revenue from the sale of these Christmas CDs, titled “Another Christmas” goes to the HPS Network. And, perhaps even more generous, the group gave the HPS Network the copyright to their original Christmas tunes – so should our little Christmas CD ever get airplay on the radio or start to catch on, the HPS Network will receive the royalties for the original pieces of music.

What a special Christmas gift for all of us with the Hermansky-Pudlak Syndrome type of albinism.

If you’d like to purchase a copy of “Another Christmas” from the HPS Network, the cost is $20.

Contact the HPS Network at:
ADDRESS
Hermansky-Pudlak Syndrome Network Inc.
One South Road Oyster Bay, New York 11771-1905
PHONE: (516) 922-3440
TOLL FREE: 1(800) 789-9HPS
FAX: (516) 922-4022
E-MAIL: hpsnet@worldnet.att.net
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