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September 2008 - Posts
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 I was going through some pics from an earlier Washington trip. I think this is the Jefferson Memorial - someone please correct me if I'm wrong so I can label this pic.
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I've had a number of e-mails and phone calls from HPS'ers wanting to know how Melanie is doing.
She's still very sick. She's still in the hospital. I really don't know much. I hate to ask her sister what's going on because I'm sure the family is just overwhelmed with caring for Melanie. She'll let us know when she's able.
In the meantime, everyone please continue to say some prayers or to help out with Melanie's fund.
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I thought I was feeling better over the weekend, but Sunday night the acid reflus wass very bad and making me feel as though I was going to throw up all night. I went to work, but had to come home by noon thanks to a code brown.
I'm calling Kevin.
This is the worst possible time to be having all these tummy troubles as things are so busy at work. It's so frustrating!!!!
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Brenda tried, but mission meet Jennifer Lopez was a bust.
I happened to be on her official Web site last night reading her blog. She hasn't blogged since August, but I found it interesting that she was blogging about how she was interested in helping in the area of health care disparities. I can't help but think that if she just knew we were out here - if she just understood the health care disparities that affect the Hermansky-Pudlak Syndrome community - and if she just knew that Donna lives right there near her on Long Island, that she would be interested. And, I can't help but think of what an impact that kind of help could have - how many people it would help us to get diagnosed and how much it would help us to raise money to serve our families and to fund research.
I went to leave a comment on her blog, but the button wasn't working. If anyone else out there in HPSland should feel so inspired, we'd really appreciate it.
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Everyone please say an extra prayer this evening for Brenda, one of our HPS'ers. She's getting up early to go to a department store where Jennifer Lopez is making an appearance. The first 300 people to buy two bottles of mens' fragrance will get a chance to meet Jennifer Lopez.
Brenda is going with her HPS t-shirt that says, "Fighting for the cure with every breath" and a fist full of literature.
Jennifer Lopez is from New York, but is Puerto Rican. She actually lives in Donna's neighborhood, although we've never been successful contacting her.
I'm sure that celebs like her get requests for help all the time, but I can't help but secretly hope that good old Jennifer is looking for a cause that no one else has taken on and one that would have meaning for her Puerto Rican roots. It could mean the difference for a lot of people fighting Hermansky-Pudlak Syndrome.
So, we'll keep our fingers crossed and we'll say some prayers this evening. We could really use some good news this week.
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I talked to Debbie this evening. She's getting better - as she says, the elephant she's felt like has been sitting on her chest has gotten up and left. But, she still sounds short of breath on the phone and is still on high doses of steroids. She's going to be in the hospital a few more days. She says hello to everyone!!!
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One of the HPS moms has created a team for HPS at a Web site called www.iwon.com. This is a game site. They feature all sorts of online games - word games, puzzles, casino type games etc. (No real money is involved). As you play different games you earn coins - the coins can be used to enter sweepstakes for prizes. If you join a charity team, the coins are also applied to the team total to potentially win $10,000. I will warn you that if you don't want to get a ton of promotional materials, to be sure to check that box when you join. I did, and they haven't pestered me. Karen had joined a few years ago and said it was so bad she had to change her e-mail account info. So, just know that. I personally like the word games. I never have learned to play poker....grin.
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 This picture is actually from a Washington trip about a year ago. This is Ryan and I at the Rosevelt Memorial - I really like this memorial because it's more like a park than looking at a statue - it's very peaceful. It's the kind of place you could take a picnic and a book and be happy for an afternoon.
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 I've got to do some homework on this one. She was the only woman out of all 50 states.
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 This is actually from the Baltimore part of the trip - it's a little lighthouse at the Inner Harbor. It's also an I-love-my-camera shot. I was on the other side of the harbor when I took this. Without the long range lense, I didn't even know the lighthouse was there - I couldn't see it at all.
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 At one point England had sent one of the original copies of the Magna Carta to Washington. The copy had to return home, but the case built for it is still there in the Capitol.
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 Each state has a statue of a famous person from there in this room - I took lots of statue pics but I should have written down who was who???
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