Hermansky-Pudlak Syndrome Network Inc

After years of building awareness about HPS among members of the American Thoracic Society (ATS), the message shined like never before at the society’s annual meeting in San Diego this past May.

Donna Appell, President and Founder of the HPS Network, was the outgoing Chair of the society’s Public Advisory Roundtable (PAR), and in this capacity worked with ATS leaders to create and host a special symposium at the event dealing with pulmonary fibrosis.

At the symposium, Dr. Gochuico presented the latest findings from the National Institutes of Health on the pulmonary fibrosis of HPS to a room full of doctors and researchers interested in pulmonary fibrosis.

Appell also helped organize and host an event open to the public called Breathing Better. Attendees included patient advocates and lung disease patients with a variety of lung disorders.

Heather Kirkwood, Carmen Camacho, Richard Appell, Richie Appell and Ashley Appell also attended the meeting and helped to man the HPS Network booth on the trade show floor. As always, the HPS Network served chocolate chip and butter cookies to doctors and researchers as they explained the platelet defect of HPS.

The Research Foundation of the ATS premiered a film dedicated to building awareness of lung disease and the importance of lung disease research. HPS appeared multiple times in the film as Donna and Ashley Appell were filmed, as well as one of our researchers, Dr. Lisa Young.

Donna and Ashley also spoke at the Research Foundation dinner and read a poem they wrote to honor lung disease researchers. The poem, coupled with their moving appearance in the research film, moved the audience. They appeared on the front page of the show daily the following morning.

The HPS Network and Donna Appell also received three awards from the ATS for work in the lung disease community.

On May 16, 2009, the Foundation of the American Thoracic Society recognized the Hermansky-Pudlak Syndrome Network for its support of the ATS Research Program and its work to advance the diagnosis and treatment of respiratory, critical care and sleep medicine.

On May 19, 2009, the American Thoracic Society recognized the outstanding contributions of Donna Appell RN Chair, ATS Public Advisory Roundtable and for her work as a member of the ATS Board of Directors. Later that day, Appell was also honored with an ATS Presidential Commendation for dedication to the mission of the American Thoracic Society, for effectively representing persons affected by respiratory disease, sleep-related conditions or critical illness and for bringing the perspective of patients and their families to her work with the American Thoracic Society.