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All Blog Posts
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Several days ago I posted that Samantha, one of our little kids with Chediak-Higashi syndrome, was going to get to meet her bone marrow donor. It is a very sweet and touching story. Here's the link to the local Tampa news station that covered the...
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These are a few more photos from my friend's recent trip back to Osterholz. These are photos from the town square. Very little has changed. This tower was always there, and I never knew what it was. There was a kind of canal that went through the...
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Osterholz American High School was located in the village of Osterholz-Sharmbeck. The army post was actually several miles away at Garlstadt (and then the US military had a shipping port presence in Bremerhaven). For the first few months that we lived...
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Here's another photo from my past. The building in the foreground was the school cafeteria and the band and choir room. It looks pretty unchanged.
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These photos were taken by our favorite roving photographer, Frankie the Cat! Grin! The guy in the white coat was interested in how HPS may affect kidneys. The tall guy introduced himself as "the mouse man." He works with HPS mice. Here we are...
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Here are a few photos of the elementary school as it looks today. It's where Ryan went to school. It was actually a large American school complex with one building for k-6 and another for 7 - 12. There was also another building for the cafeteria and...
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Here's an older photo of Osterholz American High School back when it was an American High School. I'm not sure how the building is being used now.
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An old friend from Osterholz, Christina Pocaigue Stelljes , recently revisited and took some photos of our old school and the village. Readers will have to allow me a little trip down memory lane. This is the way the entrance to the school looks now ...
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Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome Network, recently joined other patient advocates with an interest in lung disease as well as representatives from the American Thoracic Society on Capitol Hill to speak to members of...
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Pulmonary Fibrosis Patient Organizations Applaud Efforts of Patients, Families at FDA Hearing PF Patients Plead with FDA Advisory Panel to Hear Their Voices, Understand Their Plight SILVER SPRING, Md., March 10 /PRNewswire-USNewswire/ -- The Coalition...
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I know many of you hae been following the developments for people with albinism in East Africa. Let's show some appreciation to our Representatives who made this resolution possible. Although the Congress isn't the State Department, it still makes...
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The HPS Network presented to the medical staff at Soundview Health Clinic in the Bronx on Feb. 24th. The clinic serves a heavily Puerto Rican population. Donna Appell explained the ins and outs of Hermansky-Pudlak Syndrome and the services the HPS Network...
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On Feb. 24th Brenda Lopez, Leticia Colonio and Heather Kirkwood spent an hour on the streets of the Bronx handing out chocolates and brochures about Hermansky-Pudlak Syndrome in English and Spanish. The trio focused on a neighborhood near Lincoln Hospital...
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Today was a tough day for me. It was one-part a crappy medical day (literally) and to be honest, I was retreating into the Heather cave. I felt incredibly anxious and blue knowing that today there was an FDA hearing about Pirfenidone and that it could...
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For those who are able to work, this could be a great opportunity. The federal government offers very generous benefits and they are good about adaptive tech etc. Ryan's wife Sara passed this along, and I can think of so many people for whom it would...
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