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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...
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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.
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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...
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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...
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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...
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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...
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Team HPS raised more than $2,500 for HPS - the total isn't completely in yet.
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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...
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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...
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I hear this was one of the more popular raffle items - grin!
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Here are the three musketeers from Boston - Rebecca, Veronica and Carmen.
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As many of you know, this was quite the fundraiser weekend. We had a number of HPS fundraisers underway this weekend. I'm waiting on info from all of them to flow in. Here are some pictures from the fundraiser in Springfield, Mass. organized by the...
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This is my brother, Ryan, who I never thought I'd ever see on a dance floor, cutting a rug at last year's conference. He he he he....and his sister with the camera caught it!
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