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. Volunteers with HPS in the booth showed off their eyes to demonstrate what nystagmus looks like and showed photos of various members to illustrate the varying skin tones in our community.
While some of the team manned the booth, others attended scientific meetings to hear the latest in pulmonary fibrosis research and keep an eye out for developments that might be applicable to those with HPS one day.
Carmen Camacho, a member of the HPS Network’s board of directors, gave a presentation about the benefits of palliative care for patients to one of the conference’s sessions. “Pallative care isn’t just for people who are dying. It isn’t the same as hospice. More patients could benefit earlier in the course of their disease,” says Camacho.
The HPS Network also hosted a chocolate reception at The Melting Pot for HPS researchers and physicians. It is a tradition the Network started several years ago and provides a chance for interested doctors and researchers to network informally in a relaxed atmosphere. It also gives them a chance to connect in person in between the Meeting of the Minds, a research meeting held in conjunction with the HPS Network Conference.
This year’s team attending ATS included: Carmen Camacho, Nancy Lee, Donna Appell, Ashley Appelll, Demetria Saffore, Kristen Brantner, Candice Sipe and Crystal Sipe.