More pics from the 2011 HPS Network New York Conference

I have to admit, I'm blanking on the names here. These two ladies are from a school for nursing in Puerto Rico. They came to the conference because they wanted to learn more about HPS so they could develop materials to teach nursing students.

This is Dennis, one of our awesome HPS Network volunteers. Not only does Dennis help out with the Christmas concert etc. in Oyster Bay, but he's one of the people that runs back and forth to the airports during conference to pick everyone up, and take them back to the airport. He always gets assigned to "play a role" at the Saturday night dinner. Last year we made him wear tights and dress up as Superman. This year, we had a red carpet (the theme was "the Oscars") and we took photos and interviewed people as they came down the red carpet into the dinner. Dennis was the interviewer. He got to wear a tux for this!

Here Dennis is interviewing Brenda. I always say this when I post a photo of Brenda, but I do because I know she doesn't mind. Brenda has HPS. She's a perfect example of how people with HPS may not look like they have albinism.

Guess who? Yep, it's me on the red carpet.

And here is Chris (from the UK), Fran and Karen on the red carpet!

Yes, I still have a TON of photos from our last conference. I'd quit posting them for a bit, but now it's time to start getting excited about this coming March!

Photos are by Tommy Tillman!

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The next generation with Hermansky-Pudlak Syndrome

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, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Just waiting: A continuation of my transplant story…

Photo: This is me the week before the transplant. The one with the roses was taken on Valentine's Day. My sister-in-law gave the roses Ryan had brought her to me.

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After the big rush to get to the clinic early, we spent several hours in the waiting room with my luggage as if we were waiting for an airplane at the airport. It turns out the big rush was due to a hospital policy that the clinic couldn’t request a bed for me until I was actually there. The hotel Inova Fairfax Medical Center was packed to the gills, and they wanted my name on the waiting list. It was late afternoon before a bed became available. Looking back, I’m amazed at how calm we were sitting there. Perhaps we were compartmentalizing…

Family hunting

I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy.

When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history.

For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. C…

Living on the frontlines

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