Capital Campaign will go out in December

The HPS Network’s Capital Campaign will be mailed in early December. This is our annual general fundraising appeal mailing. Most charities do this, and for most, it is a major part of their budgets. This year the HPS Network lost one of our major fundraisers. It is even more important than ever that we have a successful capital campaign. If you know anyone you’d like us to add to the mailing list for this appeal, please send their name and snail mail address to: info@hpsnetwork.org. Or, if...

HPS community attends patient day at the American Thoracic Society Annual Meeting

    A group from the HPS Network attended Meet the Experts, a patient program held at the American Thoracic Society’s annual meeting by the Public Advisory Roundtable in May. This year’s theme was “The Role of Patients in Advancing Treatments and Cures.” Sessions covered various aspects of participating in research, from what questions to ask to what it means to participate in a patient registry.   After lunch, the audience broke into different groups to discuss their particular disease state....

HPS Network sends medical supplies to Puerto Rico

The HPS Network raised nearly $3,500 to help with relief efforts in Puerto Rico after hurricanes Maria and Irma. After being in contact with some of our friends in the medical community regarding what was needed, the Network purchased medical supplies and sent them, with HPS Network Board of Director member Hilda Cardona, to Puerto Rico. The Appell family helped to encourage donations by offering a $1,500 matching grant. Puerto Rico has a long way to go to recover from these devastating...

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....

Singing camp raises money for HPS

Joanne Criblez’s summer camp voice students gave a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, The performance, “A Night At The Movies Summer Cabaret” and featured music from iconic film scores. Joanne Criblez is a long-time supporter of the HPS Network and Ashley Appell’s voice coach. For many years she organized the HPS Christmas Concert with the J-Band as well as music at the HPS Network Conference in...

Coach Grill and Tavern raises funds for the HPS Network

  The Coach Grill and Tavern in Oyster Bay, N.Y. raised funds for the HPS Network by selling t-shirts at their recent pig roast anniversary party. They also recently made the HPS Network the recipient of donations earned through the cocktail of the month! The Coach Grill and Tavern is a long-time supporter of the HPS Network. Thanks so much for your support, and Happy...

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