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I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know...
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More pics from the HPS Zumba dancing at the Saturday night dinner.
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Jess Lee was kind enough to teach us how to Zumba at conference. Those who attended her session (and a few who just felt the urge) did a little Zumba at dinner.
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Every year at the HPS Network conference in New York, the kids make a grand entry marching to a song that as to do with the theme. This year it was a Seseme Street song with the Count counting sheep - in line with the slumber party theme since the conference...
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These photos are by Tommy Tillman - to refresh everyone's memory, the theme of last year's conference was "Believe in your Dreams" - thus, we had a slumber party theme for the banquet dinner. It was fun to see the PJs some folks came...
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Here are some photos Chris took while attending the Albinism Fellowship meeting in June. The Albinism Fellowship has been very helpful in Chris's efforts to build awareness of HPS and the HPS Network.
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This is the 2010 HPS Network Family Conference photo. Everyone in this photo has HPS, so you can see how widely our appearance varies.
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We try to plan a few sessions at the HPS conference that are pure fun. This year we had a session on Scrapbooking, as well as one on exercise and balance. Miv, Mervin's mom, taught the scrapbooking session. I couldn't go because I had to be elsewhere...
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Matt's parents at lunch The DelVecchio family. Marie is the tag sale diva! This is me eating lunch and picking the brains of Dr. Young and Dr. Markello. And now I'm saying, Hey Tommy, don't take a pic of me eating!!! Grin! Mervin's mom...
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Photos by Tommy Tillman - a.k.a Tommer
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Congrads to Gabe, my buddy in Boston pictured here with his mom. He's all dressed up in a sharp tie to celebrate his fifth grade graduation. Can you believe how fast kids grow up? Gabe is my pill buddy. We race each other to see who can down their...
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The HPS community is very saddened by the loss of Donna Appell's dad, known by everyone as "Grandpa." He passed away this past weekend. I'll post the obit as soon as I get it. In the meantime, here's what I know so far. The wake...
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To thank Dr. Lomax for all of her time on the Mystery Diagnosis project, we gave her a basket full of goodies and an HPS Network t-shirt. Here Karen is thanking Dr. Lomax and giving her the gifts.
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