Living on the frontlines

We just added a new HPSer to the patient registry! Okay, that's two in the same day. I didn't think we'd get this one finished today. This puts us at 75 to go on this year's Hundred People Search! Keep up the great outreach! 

We've added a new HPSer to the patient registry. This puts us at 76 to go on this year's Hundred People Search. We have several others in the pipeline now so there will be more updates soon. Also, we haven't gone through the data from Puerto Rico yet. Keep up the great outreach! 

I have so much to share from our trip to Puerto Rico that I don't even know where to start. So, I'll start out with what I need to get posted for the HPS Network Website. Then, I hope to do more personal reflections.  Team HPS visited the San Juan City Hospital during HPS Puerto Rico Outreach Week to meet with Dr. Ricardo Fernandez, Director of Pulmonary Fellows, and 16 doctors in the pulmonary fellows program. HPS Network President Donna Appell gave a presentation on HPS and the needs of read more:  https://www.hpsnetwork.org/en/news/2013-08-27/team-hps-visits-san-juan-city-hospital

We have added a new  HPSer to the patient registry. This puts us at 77 to go on this year's Hundred People Search. 

Yesterday we were able to announce that Dr. Lisa Young was awarded a $1.9 million grant from the National Institutes of Health to study Hermansky-Pudlak Syndrome.  This is great news on so many levels!!!  I can’t stop smiling.  It’s great news for Dr. Young and her career. We love her and we love to see good things happen to her. It’s great news because it will allow Dr. Young to spend time in her lab studying HPS. After all, research doesn’t come for free. It’s expensive. Somehow you’ve got to keep the lights on, support the equipment, the staff time etc. Lastly, it’s great for the HPS community.  Research equals hope.  It’s been a tough few weeks in HPSland. There have been some sad events. Sometimes it feels like we’re turning our wheels. Progress is expensive and slow. So, this announcement gives us new reasons to have hope and to celebrate!  Read more about Dr. Young and her grant at: http://www.hpsnetwork.org/en/news/2013-08-08/young-awarded-19-million-nih-grant-to-res

Today we added three new HPSers to the patient registry! Three new ones this week. This puts us at 78 to go on this year's Hundred People Search. Keep up the great outreach work!