Shop for the cure at iGive

In July, the HPS Network received a check for $86.56 from www.igive.com – an online shopping mall that allows merchants to donate a percentage of your purchase price to the cause of your choice. Granted, this is not a ton of money, but it will pay for six new patient packets. Everything matters because the HPS Network is such a small non-profit. Thanks for shopping at www.igive.com and please, keep it up! Share it with friends, and ask them to choose the Hermansky-Pudlak Syndrome Network as...

Center opens for HPS study in Chicago

Oyster Bay, NY – A study location for an observational study of Hermansky-Pudlak Syndrome has opened at Loyola University in the Chicago area. Hermansky-Pudlak Syndrome, or HPS, is a type of albinism that involves other health-related issues beyond low vision and pigmentation such as a bleeding disorder, and in some gene types, bowel and lung issues. The lung disease of HPS is called Pulmonary Fibrosis and causes a scarring of the lungs that, without a lung transplant, is ultimately fatal. HPS...

Space Camp scholarships for students with albinism

The National Organization for Albinism and Hypopigmentation (NOAH) is sponsoring a scholarship to help with registration fees for the Space Camp for Interested Visually Impaired Students (SCIVIS) at the U.S. Space and Rocket Center in Huntsville, AL. The scholarship only assists with the camp registration fees. Transportation and other expenses are up to the camper’s family to cover. The deadline to apply is rapidly approaching. To apply, find out more at:...

Donna Appell nominated for Eagle Rare Life Award

Donna Appell, Executive Director and Founder of the HPS Network, has been nominated for the Eagle Rare Life Award, a contest held by the Eagle Rare Bourbon company. To win, however, she needs your vote every day until Dec. 5th. If Donna wins, the prize is $50,000. There are also six runner-up awards of $5,000 each. Voting can get us into the top 30 finalists, but after that, the votes are 20 percent of the score. You can only vote every 24 hours. It just takes a second! Go to:...

Boxcar Bar and Arcade holds HPS Network fundraiser

The Boxcar Bar and Arcade in Greensboro, N.C. held an Fundraiser Night on June 28 to benefit the HPS Network. They donated 15 percent of sales to the HPS Network from the night. Karen and Tommy Tillman worked with Boxcar on the event and offered information about the HPS Network that night. Boxcar Bar and Arcade is a bar that also offers an array of video game classics the way you might remember them from the video game arcade days, from Pacman to Pinball. Attendees spent the evening playing...

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