HPS Network outreaches at 2019 American Thoracic Society International Meeting

A team from the HPS Network attended the American Thoracic Society (ATS) Annual Meeting, held May 17 – 22 in Dallas. The group was able to interact with more than 14,000 lung physicians, researchers, and representatives from pharmaceutical companies, at the HPS Network booth in the exhibit hall, and by attending some of the thousands of lecture sessions, scientific poster sessions and special events. Donna Appell, Founder and Executive Director of the HPS Network, serves on the ATS Public...

HPS Network partners with the ATS Foundation to fund another cycle of HPS research grants

Thanks to the hard work of our members and donors, the HPS Network will be able to partner again with the American Thoracic Society (ATS) Foundation to fund another HPS research grant. The $40,000 per year runs for two years and is funded half by the HPS Network, and half by the ATS Foundation. The ATS Foundation also gives us valuable support and know-how to collect and manage grant proposals and have them evaluated by scientists to select the awardee. Historically, these grants have been a...

HPS Network visits the Kotton Lab

The HPS Network visited the Kotton Lab in Framingham, Mass in July to learn more about how the lab is using stem cells derived from the blood of people with HPS to find clues to treat the lung disease of HPS. The lab collected blood samples at the HPS Conference two years ago. The Kotton Lab is known the world over for their stem cell work on a variety of lung diseases. While there, the visitors from the HPS Network learned more about induced pluripotent stem cells, the process to coax them to...

Meeting of the Minds tackles HPS research questions

A record number of researchers attended the 5th Annual Meeting of the Minds scientific meeting, held March 9 – 10 at the HPS Network Conference. In all 46 physicians and scientists, all working on various aspects of research related to Hermansky-Pudlak Syndrome, gathered to share findings and plot future goals. “It was amazing to watch so many great minds together,” said Donna Appell, Executive Director and Founder of the HPS Network, “It is exciting how quickly this meeting has grown, and how...

HPS community wishes NHLBI a Happy 50th

Attendees at the 26th Annual HPS Network Conference, held in Uniondale NY in March, created a video to wish the National Heart, Lung and Blood Institute (NHLBI) at the National Institutes of Health a happy 50th anniversary. NHLBI was pleased with the video and plans to use it at various events throughout the year. If you wish to follow the NHLBI through its 50th anniversary year, follow the hashtag #lung50. If you’d like to see the video, go to: https://youtu.be/1C1wwPzdeYY On April 9th...

HPS Network celebrates its 26th Annual Conference

    The HPS Network and community celebrated togetherness at the 26th Annual HPS Network Conference, held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. Themed, “Life is Sweet When We Are Together” the event attracted approximately 300 people affected by the Hermansky-Pudlak Syndrome (HPS) type of albinism, their families, physicians, interested researchers and supporters. Attendees shared stories about living with HPS, listened to medical experts explain key points...