Purchase coffee and tea to help fund the cure

Sandra Ocasio and her daughter Cassandra Mendez Ocasio are holding an online fundraiser to raise money for the Hermansky-Pudlak Syndrome (HPS). The fundraiser will run through Nov. 14 and is selling various coffee and tea products. “I bought some tea last year to give as Christmas gifts. It was a great way to not just give a gift, but to give a gift that gave twice!” says Heather Kirkwood, Vice President and Director of Communications for the HPS Network. To make a purchase, go to:...

Room block reservations open for 25th Annual Conference

Make hotel reservations now to attend the 25th Annual HPS Network Conference, March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. Rooms are $154 a night plus tax with the room rate. The theme of this year’s conference is Our True Colors and the banquet dinner will be a celebration of our 25th (silver) anniversary! Don’t miss this historic, and informative, event. To make reservations online, go to: http://tinyurl.com/hps252018, or to make reservations by phone call: 516.794.3800....

A Run Through History 5K to be held in Oyster Bay, NY

The second annual A Run Through History will be held Sunday, Oct. 22nd at 8:30 am at Theodore Roosevelt Memorial Park in Oyster Bay, NY. The event will benefit the HPS Network and PeerPals.org. To participate in the race, there is a $25 entrance fee, plus a $2.50 sign-up fee. Come run, or just walk, with your friends! The HPS Network is an Oyster Bay-based non-profit serving those impacted by Hermansky-Pudlak Syndrome or HPS. HPS is a type of albinism that causes decreased visual acuity (often...

Campers will sing to raise money for HPS

Joanne Criblez’s summer camp voice students are giving a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, 720 Northern Blvd., Brookville, NY. The performance is “A Night At The Movies Summer Cabaret” and will feature music from iconic film scores. Tickets are $10 and available at the door. Joanne Criblez is a long-time supporter of the HPS Network and Ashley Appell’s voice coach. For many years she organized...

Deadline approaching for HPS/ATS research grant

Letters of Interest for the American Thoracic Society Foundation and Hermansky-Pudlak Syndrome Network Partnership research grant are due June 6th. LOI submission forms, and more information about the grant, can be found at: https://www.thoracic.org/professionals/research/research-program-portfolio/partner-grants-loi.php. The grant offers $40,000 per year for two years to an investigator interested in research that is directly relevant to the pulmonary fibrosis of Hermansky-Pudlak Syndrome....

Join the HPS Network for patient day at the American Thoracic Society

A group from the HPS Network will be attending Meet the Experts, a patient program held at the American Thoracic Society by the Public Advisory Roundtable. This year’s theme will be “The Role of Patients in Advancing Treatments and Cures.” The seminar will be held Saturday, May 20, 2017 from 10:00 am to 2:00 pm at the Renaissance Washington DC Hotel, 999 9th St. NW in Washington DC. Parking validation, lunch and complimentary oxygen will be provided. Sessions will be about various aspects of...

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