Living on the frontlines

Dr. James White, a Regents Professor at the University of Minnesota Department of Laboratory Medicine and Pathology, has retired. Dr. White developed the electron microscopy test for Hermansky-Pudlak Syndrome. For decades, he has helped people with albinism test for Hermansky-Pudlak Syndrome free of charge. Thanks to his efforts, those who are affected by the syndrome have been able to seek out appropriate medical care and live better, healthier lives. Likewise, countless people with albinism who tested negative have been able to rest easier.  Dr. White received his medical degree from the University of Minnesota in 1955. His career is a catalog of publications on all sorts of disorders affecting bleeding. His CV is full of academic and medical honors including most recently:  • International Health Professional of the Year, 2005 • AcademicKeys Who’s Who in Medical Sciences Education, 2005 • Harold S. Diehl Award, 2005 Dr. White’s lab will no longer be the testing center for

We've got a Hundred People Search (HPS) update! We're now at 84 to go on this year's Hundred People Search. When we make progress towards better treatments, and someday the cure, we don't want to leave anyone behind! 

New York City-based Spanish language newspaper El Diario ran a feature story about HPS on Monday, Aug. 6th. Several members of the HPS Network shared their experiences with HPS for the story. Dr. Samuel Seward, member of the HPS Network board as well as Scientific Advisory Board, was also interviewed for the article. Read the online version of the article at: http://www.eldiariony.com/Raro_albinismo_asfixia_a_los_boricuas

A team from the HPS Network exhibited at the National Association of Parents of the Visually Impaired (NAPVI) Conference in late July. The team answered questions about HPS and networked with other presenters and vendors at the conference.  Carmen Camacho, Frankie Feliciano, Christian Feliciano, Yara Nunez and Rebecca Rosado all worked at the HPS Network table.  “It was a great experience,” says Carmen Camacho, “Not only did we get to talk to parents who might know others with HPS, but we were able to make some valuable connections that I hope will benefit our membership as well.” 

We have a Hundred People Search update - HPS Update - we've added another HPS'er to the registry. This makes 86 to go on this year's Hundred People Search (HPS).