HPS Network donates funds to support pediatric HPS Clinic in Puerto Rico

The HPS Network donated $1,000 to support the efforts of Dr. Enid Rivera and Dr. Wilfredo De Jesus Rojas to provide a pediatric clinic for children with Hermansky-Pudlak Syndrome in Puerto Rico. The funds went to purchase a spirometer, mouth pieces and nose clips for the clinic. Dr. Rojas is interested in exploring the pulmonary function of children with HPS to see if there is anything we can learn to identify lung disease early. The clinic is held the third Thursday of each month at the...

HPS Network supporters eat for the cure at Outback Steakhouse

Supporters of the HPS Network ate for the cure in September at the Outback Steakhouse in Marlton, NJ. The restaurant donated a percentage of the purchase price of patrons who said they were there to eat for HPS. Several HPS families also attended the event and manned an informational table. The event was organized by Amber Klein and Becky Nieves. The Nieves family also attended, as did Jeff Klein, Yari Alvarado, her mother-in-law and her two...

Dell to match donation dollars for HPS post transplant program

Edwin Santiago has partnered with his employer, Dell, to help the HPS Network raise funds to purchase spirometers for post-transplant HPS patients. Spirometry is vital to post-transplant patients because even small changes can be the first tip off to potential rejection or infection issues, sometimes even before other symptoms are felt. Survival rates are better when such complications are treated early! Often, however, spirometers are not covered by insurance. Dell as agreed to match up to...

Team HPS attends American Thoracic Society International Conference

A team from the HPS Network attended the 114th American Thoracic Society International Conference in San Diego in May to hear the latest in pulmonary research, and to generate awareness of Hermansky-Pudlak Syndrome (HPS). More than 116,000 pulmonary doctors, researchers, nurses and therapists from 102 countries attended the conference. The HPS Network manned a booth on the exhibition floor to generate awareness, provide literature to interested doctors and researchers and to answer questions....

Dr. Drack, ophthalmologist, to speak at HPS Network Conference

Dr. Arlene Drack, an ophthalmologist from the University of Iowa, will speak to families affected by Hermansky-Pudlak Syndrome (HPS) at the HPS Network Conference, March 8 – 10, 2019 at the Long Island Marriott in New York. Dr. Drack is a clinician scientist specializing in juvenile inherited eye diseases. She is the inaugural Ronald V. Keech Associate Professor in Pediatric Ophthalmic Genetics at the University of Iowa Department of Ophthalmology and Visual Sciences. Her research focuses on...