NOAH AOC

I want to send a kudos out to Sandra, an HPS’er in Puerto Rico. It’s election time in Puerto Rico, just like in the rest of the United States. When various candidates for office come knocking on Sandra’s door to talk politics and ask her for her vote, she tells them that she will gladly listen to what...

Some time ago I told regular readers about Science Debate 2008. As you know, although I've got my own political opinions, and although this is a personal blog, because right now it's sort of an HPS defacto news site, I don't blog about my own take on politics. I don't want us to fight...

We’re looking for volunteers. As many of the veterans know, the lung lavage fluid many of us have donated in recent years has really helped to make a dent in HPS research. It’s helped the scientists to start to understand some of what happens at the cellular level with HPS. It’s help them to begin to...

This past Saturday the HPS Family Conference Puerto Rico was held in Ponce. We estimate there were about a 100 people there. That number is down from previous years, however. There was a snafu with transportation and the conference didn’t receive as much media attention as in the past, thus these factors...

Today is a slower day for the gang in Puerto Rico. A few of them went to a factory today that employs people who are legally blind. Many of the people there are HPS’ers. The factory would only allow five people in, however, thus the rest of the group set about doing last-minute publicity for the patient...

This morning Donna, Ashley and Richie joined Hilda and Carmen on the outreach trail. They visited hospitals and doctors’ offices in Villalba and Coamo. The team also met with Jadali (sp?) who was at the conference in New York. She’s an HPS’er working on her PhD in epidemiology and genetics. This afternoon...

Carmen just called from Puerto Rico with an update for the first day of outreach. Carmen and Hilda met up today to hit the road in search of places to talk to about HPS. Donna arrived in Puerto Rico at the crack of dawn, so she, Ashley and Richie stayed behind the first part of the day to catch up on...

Just a brief update on the 100 People Search. We added a new person to the HPS Network patient registry this week. And this week the new member will require us to update our map as well. The person is from Peru, a country that before now hasn’t had a case of HPS that we know of. It’s so helpful, even...

The HPS Network has signed onto an effort to ask Congress to include rare disease research as an area of research that is deserving of special attention in the Small Business Innovation Research Program. The program is up for renewal, so it’s the time when Congress can make changes. This is the program...

We just got a head's up from Jose at NIH about a change in travel from Puerto Rico to the NIH. I don't want anyone to get caught off guard, so if you all could help us get the word out, that would be nice. Apparently most of the HPS'ers in the protocol coming from Puerto Rico take United...