NOAH AOC

A big thanks to Lisa who created the map above for future HPS Network presentations. One problem we encounter doing outreach for Hermansky-Pudlak Syndrome is that too often people believe it’s a syndrome that only happens to people with albinism of Puerto Rican background. That’s just not true. Yes,...

Organizers of the Florida HPS Outreach recruited family and friends to cook for the event to keep costs down. I heard the food was AWESOME! Here it is lined up in the church kitchen. Thanks for the pics Debbie.

The outreach in Florida was definately a success. I'm still waiting on all of the information to be processed to see how many new people we found. But, we were also able to reach some folks we knew already, but who had not been able to attend an HPS conference. Here Donna is giving her history of...

Here is our booth at the ATS Show in 2008. Pictured above, from left to right, are Ashley, Izzy and Karen. You'll notice a huge picture of Lisa in the back of the booth. So often the doctors think that someone with albinism has to be blonde. We blew up a picture of Lisa with the logo, "Could...

One of the activities that takes place at most medical meetings are the scientific poster sessions. I like to think of them as a science fair for grown-ups. I did manage to make several of the poster sessions presented at the American Thoracic Society, and while there see Dr. Young and Dr. Gutentag and...

I’m back home! I had hoped to be able to keep up with the blog while at the conference, as well as the listservs – but alas the wireless at the hotel wasn’t working. I didn’t see the point in paying for a LAN connection since by the time I was back in my room at night, I was pretty much ready to just...

Team HPS raised more than $2,500 for HPS - the total isn't completely in yet.

While the Falcons were playing hockey, in Greensboro team HPS was walking in The Human Race. I especially want to point out the woman sitting next to Karen at the table. This is Karen Bailey. Karen Bailey spent most of the last year in the hospital after contracting MRSA. She's made a miracle recovery...

Pictured here is the HPS Hockey gang, mius Christina's dad. Pictured here are: Rebecca, Veronica, Christina (one of our newer little HPS'ers), her mom Sarah and Carmen. A special thanks to the Springfield Falcons for donating a percentage of their ticket sales to HPS!!!!!