Hermansky-Pudlak Syndrome Network Inc

Several HPS’ers and their families organized a regional get together the last weekend in October at the home of HPS board of directors’ member Carmen Camacho and her husband Frankie Feliciano. The group enjoyed fellowship and a meal cooked by Frankie and Carmen’s mother.

Carmen did a “Presentation in a Bag” training for everyone present and answered questions about HPS from some of the newer members of the group. “Presentation in a Bag” is designed to empower those affected by HPS to be able to educate those in their community about the syndrome – whether it be medical professionals or civic groups interested in supporting the work of the Network.

Two families, one pre-transplant and one post transplant, were also able to meet one another and exchange fellowship.

This event was held in the Boston area. Future events will likely be held in Massachusetts or Connecticut. If you’d like to know about future HPS get togethers in New England, e-mail Carmen Camacho at: camachoc2000@yahoo.com

Other families in other regions have expressed some interest in organizing friendly regional get-togethers for fun or to organize fundraisers. If you live in the North Carolina area and would be interested in such an event, contact regional coordinator Karen Tillman at: ktillman1@triad.rr.com