Hermansky-Pudlak Syndrome Network Inc

More than 260 people with Hermansky-Pudlak Syndrome and their families and friends celebrated their “inner hero” at the 16th Annual HPS Network Conference, March 20 – 22, 2009 in Uniondale, New York. The conference theme, “The Hero Inside of You” celebrated the many heroes in the HPS Network family. Volunteers even got into the act by dressing up as comic book superheroes and dropping in at the conference banquet and closing session.

Conference sessions gave those impacted by HPS a chance to reconnect with one another, learn tips about living with HPS and hear the latest in HPS research from the world’s leading experts.

“My favorite sessions were the doctor sessions on Sunday,” said Ana Guzman, a conference attendee, “I thought Dr. Young’s presentation offered so much hope for the future.” Dr. Lisa Young presented the results of her research funded by a joint grant from the HPS Network and the American Thoracic Society.

Attendees also learned about findings from lavage fluids gathered from volunteers with HPS at the National Institutes of Health (NIH). Dr. Bernadette Gochuico reported that the lavage fluids, as well as explanted lungs donated by those who have received a lung transplant or passed away, have yielded many clues that are helping researchers to unravel the puzzle about what actually happens in the lungs of those affected by the pulmonary fibrosis of HPS. Updates were presented on the various protocols underway at the NIH. As of this writing, there are 36 patients enrolled in the current Pirfenidone study. Only four more are needed to complete the necessary recruitment for this study.

It wasn’t all medical presentations, however. Those impacted by HPS gathered for the annual Family Album circle and exchanged tidbits about what happened to them in the last year, as well as what they’re looking forward to in the next year.

Dr. Murray Brilliant, from the Department of Pediatrics at the University of Arizona School of Medicine, explained how HPS is inherited in an entertaining presentation where he used pool noodles to represent genes. Volunteers from the audience held the noodles and played the roles of parents or children.

Saturday afternoon attendees divided into special interest groups – adults with HPS, parents of children with HPS and family, friends and spouses of those with HPS. Often people from any one of these groups appreciate this opportunity to express a concern or ask a question they might not feel comfortable asking in front of family or a relative with HPS. Likewise adults with HPS often appreciate the chance to express a concern they don’t want to share with family. The sessions offer a chance to connect with others in similar circumstances.

In the late afternoon attendees chose from a variety of sessions. Dr. Melissa Merideth presented the results of her survey of women with HPS and their experiences with various women’s health issues such as child birth. Debbie Mandel, an author and radio host, offered tips on stress management. Representatives from Mary Kay returned by popular demand to help with make-up tips and tricks.

“I loved the Mary Kay session,” said Marisol Goico, a conference attendee, “I learned a lot.”

The Saturday evening banquet gave attendees a chance to let their hair down and dance. The board of directors from Puerto Rico and Sen. Lucy Arce Ferrer presented Donna Appell and the HPS Network with a special resolution, Resolución del Senado Num. 239, passed by the Puerto Rican Senate honoring the conference and the work of the Network.

“My favorite thing about conference, not just this year but every year, is the overwhelming sense of family,” said Jessica Lee, another conference attendee, “Even though the time is so short, and we get bigger every year, we still act like a giant family. We never seem to lose that.”

Goico added, “The only thing I don’t like about conference is saying good bye.”