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July 2008 - Posts
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One of these days when I get the newsletter finished, I really want to produce a cookbook for a fundraiser for HPS. As regular readers know, there's a recipe section on this blog. The idea is to collect recipes for the future cookbook. By putting them on the blog all of you, the readers, can act as our test kitchen to make sure all of the instructions are clear etc. for the recipes.
The following recipe was submitted by Ana! Thanks Ana!
Chinese Purple Cabbage Rolls with Apples
1 cup chopped shiitake mushrooms
¼ cup chopped fresh parsley
½ cup diced carrots
½ cup chopped zucchini
¼ cup chopped scallions
2 teaspoons tamaridash of freshly ground black pepper
5 tablespoons toasted sesame oil
1 cup cooked wild rice blend or medium grain rice
1 cup cooked adzuki beans
¼ cup sesame seeds
2 cups sliced apples
½ head or 10 leaves purple cabbage, steamed 3 to 4 minutes
½ cup chopped nuts
Method
In a large saucepan, sauté the mushrooms, parsley, carrots, zucchini, scallions, tamari, and pepper in the sesame oil over medium heat for 5 to 7 minutes. Stir in the rice, beans and sesame seeds. Set aside. In a separate saucepan, cook the apples and juice over medium heat for 3 to 5 minutes or until tender. Set aside. Place one or two tablespoons for vegetables stuffing on each cabbage leaf where the thick stem is. Fold the right side of the leaf over it, then the left, and roll up. Place the stuffed leaves in a greased pan and top with the apple mixture and nuts. Cover and bake in a preheated 375 degrees oven for 25 to 30 minutes.Yield: 2 servings
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 Here's Lyra and her big brother helping her up. She's so funny. She'd get so impatient trying to get up on the jungle gym and before I could help her, big brother was on the scene!
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 I really enjoy taking pics - not that I'm a photographer or anything (although I'd love to take a photography class). I've been moving things over from my old computer to the new one and I'm down to the not-so-mission-critical stuff, my own pics. As I'm going through these pictures I'm finding some I just really like and I'm going to post them because, well, this is my blog and I'll post if I want to - he he he.....hope everyone will put up with me! This photo was taken at the Kansas City Renfest.
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Janet posted to the HPS adults listserv yesterday. For those of you following her story, she’s officially off the oxygen, walking around as much as she pleases, and feeling great! Go Janet!!!!
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I talked to Ryan while I was eating lunch yesterday. I think he’s getting bored. He was laying on Sara’s couch watching TV, and I think I woke him up. Harvey the cat is keeping him company and he’s off the prescription pain killers and now on Tylenol. But, he’s still keeping ice on the wound and says there’s still swelling and a lot of bruising. I’m anxious for his doctor’s appointment next week. I wonder if the swelling more than a week post operation is normal?
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The following item was on the NOAH blog this morning. For readers who read this blog directly on my Website instead of on NOAH"s Website, I thought I would repost this for you. Our condolences to Mr. Moore's family. From the Desk of NOAHDennis Moore, NOAH founding member, passes away at age 59.
NOAH was saddened last week by the news of the death of one of the organization’s founding members.
Dennis Moore, 59, of Fairless Hills, Pa., passed away on Tuesday, July 22, 2008. Mr. Moore, who is the father of NOAH co-founder Lee Laughlin, was one of a small group of people who met in Philadelphia in October of 1982 for a one-day albinism workshop. It was from a seed planted at that workshop and a dinner before it that NOAH grew into the world’s premier support organization for the albinism community.
Mr. Moore had been in poor health as of late and was unable to attend NOAH’s 25th anniversary celebration in Philadelphia this past November. NOAH recognized Mr. Moore’s role as a founder with the presentation of a book clock.
“We all owe Dennis and the other NOAH founders a debt of gratitude for turning ideas into action,” said NOAH President Mike McGowan.
We ask that you keep Mr. Moore’s family in your thoughts and prayers.
Published Jul 29 2008, 09:06 PM by Brendan Cosgrove
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Don’t forget! Gretchen Golas, the nurse practitioner at the NIH that works with pediatric HPS’ers has joined the HPS families listserv for a week to field questions families might have about the NIH or raising a child with HPS. Do you have questions? Gretchen has answers, and if she can’t answer you we’ll help you find the answers. Although the Families listserv is mostly made up of parents of small children right now, it’s open to anyone who is a supporter/caretaker for someone with HPS. It’s a great place to stay up to date on what’s happening in the HPS Network as well as network with other families. If you’re not on the list but would like to join, e-mail hkdawn@yahoo.com. Just let me know who you are and what your HPS relationship is.
Topics Gretchen has fielded so far:
Ear piercing
Treating nose bleeds
Topics currently under discussion:
Eye surgery
Keeping young lungs healthy
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 For those in the greater Chicago area, this would be a great event to support. The Vision of Tomorrow Foundation not only has been a supporter of the HPS Network, but they're also very interested in funding research into other types of albinism as well. I know this flyer might be hard to read here, but I think if you click on it you'll get a bigger image you can print out. It looks like fun!
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Ahhh…wedding planning. Ryan and Sara have been hard at work planning their wedding. Ryan asked Matt to be his best man, and they’ve asked me to do some artwork for the wedding program etc. I’m thrilled to do it, but I’m a little rusty. I think I need to do some warm-up art first. Grin!
It looks like the big day will be January 3rd, although Ryan and Sara have their first big meeting with the minister next week so it’s not in the bag until he signs off.
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 Here's another forgotten conference photo - this is your board hard at work on the day before conference starts. We had a bit of a delay midday when the hotel needed to get to a pipe that happened to be located above our meeting table. Not cool - we lost about an hour and now, here we are frantically trying to catch up.
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 I found a few pics from conference that I hadn't posted and this was one of them. It's Elsie sitting in the opening session. I love her haircut - hmm....wonder why? She looks like my twin!
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It has happened again. Another person with albinism has been killed in Tanzania. His wife, who also has albinism, was injured and now their children with albinism are likely at risk.
Every time I read one of these stories my heart breaks. I want to do something.
Here's the story from the BBC. I also want to send a big kudos out to the BBC reporter covering this story. It's my understanding that the witchdoctors are now threatening her as well.
Tanzania albinos targeted again
Many albinos are living in fear of their lives
Tanzanian police say another albino man has been murdered - the 26th victim in the country in under a year.
The attackers reportedly severed the man's right foot and genitalia. His wife, also an albino, was also injured.
Witchdoctors want the parts for potions they say make people rich, reports BBC correspondent Vicky Ntetema.
In an undercover report last week, she was offered albino body parts by witchdoctors, who said their clients included police officers.
To read the whole story, and see some pictures as well, go to: http://news.bbc.co.uk/1/hi/world/africa/7527729.stm
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 Don't you just love those glasses? I wonder how my mom ever kept mine on! This is Lyra from the midwestern albinism picnic.
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