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April 2009 - Posts
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 Photo by Joe Sipe
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I think this is becoming my theme song whether I like it or not. - No social security check for May.
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This is a public service announcement from the Coalition for Pulmonary Fibrosis. As regular readers know, many of us with Hermansky-Pudlak Syndrome develop pulmonary fibrosis. I have pulmonary fibrosis but am very lucky to be in a clinical trial right now.
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 Here are some little crafty items I did just for grins. I do intend to do more paintings for the HPS Network craft bank - but honestly - sometimes I'm just not in the mood. I'm tired and I just want to do something simple. After Christmas last year I cleaned up at the Michaels sale. I made six of the Santa pins. They're essentially made with a cotton ball and a little bead for the head. They were supposed to be ornaments, but they're so little who would see them on a tree? I thought they'd make cute pins - so I put a pin back on them. The "snow" sign is essentially a wood cut out I painted white, and then applied white sparkly stuff to the front. It's meant to hang in a window or on a door. And the little bow shelf - well, all I did was paint it red. More items to come - these are going into a box to be sent to the Network, but I'm not sending it until it's full.
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For the second year in a row, the Springfield Falcons in Springfield, Mass have come to the aid of the HPS Network. For two of their games, they donated $2.00 for every ticket sold by a representative of the HPS Network. And, four adult league teams held special exhibition games before the Falcons game to help raise awareness of HPS in the community. Way to go Falcons, and way to go McGillicuddy family (organizers of this fundraiser.) Check out the HPS Web site in the next few days to read more about the event. http://www.hpsnetwork.org.
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Over the last few days I've been getting to know Marla Palmer from Utah. She keeps a blog for the Utah chapter of the National Organization for Parents of Blind Children and she has two children with albinism. Her kids are learning Braille. Her blog had some really cool links to Braille resources for anyone trying to get started learning the code.
I'll add more of them when I've got time, but there's one that does online Braille flashcards. Of course, that's visual, but that's not all bad.
I'm learning to read Braille with my fingers, but I am a visual learner. Sometimes for my memory it's helpful to see the contraction so I know what I'm supposed to be looking for with my fingers.
More new links to come (and I need to update some of the old ones.)
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Here's an update on the three-to-one matching challenge. We're only $50 away from reaching the $500 goal for this matching grant. WooHoo!!!!
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Below is a story my sister-in-law sent. Thought some of you would find it interesting. Tanzania bishop calls for protection for albinos Sunday, 26th April 2009. 11:43amBy: George Conger.The Anglican Church of Tanzania has joined the battle against the discrimination and abuse of albinos. In his Easter Sunday sermon, Bishop Phillip Baji of Tanga denounced the killings of an estimated 45 albinos since mid 2007, saying the murders dishonored God and disgraced the nation.
The church called for the government to crack down on traditional healers or witchdoctors who trafficked in albino body parts. In February UN Secretary General Ban Ki-moon urged Tanzanian President Jakaya Kikwete to address the issue, saying the killings were a “gross violation of human rights.”
Read the rest of the story:
http://www.religiousintelligence.co.uk/news/?NewsID=4316
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Some months ago I noticed a new thing on the bar on the right side of the blog. I noticed that some of you have signed up as "followers." While flattered, I've been trying to figure out how that happened.
When I figured that out, I then couldn't seem to figure out how to follow anyone else's blog.
What do you know but there's a button on the top,. right next to the button for ratting out inappropriate blogs, to "follow" a blog.
Okay, so I'm a little slow.
Thanks to those of you who are "following" the blog. I know I've got some regulars, but it's always nice to know there are actually real people out there! HA!
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I was so looking forward to attending The Mouse Project fundraiser, but alas, mother nature conspired against me and last night I actually slept in my own bed.
My flight out of Kansas City was delayed because of severe weather. We sat in the plane for an hour before takeoff. By the time we arrived in Chicago I had seven minutes to make the flight connection.
Knowing it would be tight, I asked the flight attendant if there was anyone else on the flight making the same connection and if so, if he’d mind asking them if I could follow them to the next flight. Sure enough, there were several of us headed for Fort Wayne. We ran through the Chicago airport and made it to the gate (in another terminal) two minutes after the door was closed. What irritated me was that the plane to Fort Wayne had 20 seats maybe, and six of us were coming from this Kansas City flight. You would think that knowing we were on the ground and coming, United would have held the flight.
So, my newfound friends and I went to customer service where, despite severe weather and so many delayed flights, they had one customer service representative.
I tried to get on another flight on another carrier, but it was overbooked and the standby list was long. I even tried to see if I could get a bus the rest of the way. Nothing.
So, rather than get the next flight that would have had me to the fundraiser for a half hour, I decided to save the hotel and taxi bills on the other end and fly back to Kansas City.
Thanks to all the weather, however, we sat on the tarmac in Chicago, in a little plane none the less, for four hours. I didn’t get home until late. I’m glad I did it though because the flight I was supposed to be on out of Fort Wayne today was cancelled.
I am greatly disappointed that I didn’t get to attend the event. Becky Molter sent me the program and it looked like it was going to be amazing. They had a long list of silent auction items. Two ideas that I loved (saving them to steal in the future) were the live painting and hope toast. There was to be an artist at the event that would paint a painting during the course of the evening. The guests could watch, and it was sold at the end of the event.
The other idea was the hope toast. Guests could buy glasses of champagne for $20 for this special toast.
Mostly, however, I’m disappointed that I didn’t get to express my appreciation to all the people that make this event possible in person. I wonder if they truly understand what a big difference they’ve made in all our lives.
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This is the video the Tillmans created to share at The Mouse Project Fundraiser.
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 Boo-hoo I wasn't there! Here are some of our Washington local HPS'ers who got to have dinner with Sandy, Ashley and Donna on Tuesday night at the Cheesecake Factory! Sandy has never been to an HPS conference, so many of us have never gotten to meet her in person. She's the second one next to Julie. Sandy also spent some time with Kathryn in Roanoake and there's some nice pics of them on Kathryn's blog too.
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 And here's the runner up from the Facebook contest. Great job! Drum roll..............The 1st runner-up for our DNA Model Photo Contest is.......Paula K Nance and her sophomore Biology class students.... We'll be contacting you Paula, to arrange for a small prize because we were so impressed with your submission given that it's Earth Week. Well done and congratulations.
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I just logged onto Facebook and saw the following.....congrads to the winners!!!National DNA Day This year's WINNERS of the DNA Model Photo Contest are.......Angie and Peggi from the American Society of Human Genetics for their entry:"Fortune Cookie DNA Helix - Crack the codes of DNA and read your fortune.Submitted by ASHG staff Angie and Peggi. Idea by Karen. Thanks for your help, Mike, Jo and Ray."Congratulations, Angie and Peggi. We'll contact you soon to arrange for delivery of two NHGRI 19 oz. mugs.
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 Since I'm such a night owl, I just looked at the clock and guess what - DNA Day is here! A big kudos to all the hard working scientists and doctors out there that have spent their lives figuring out our DNA - they give us hope for the future and there's no better medicine than that!
And here's my favorite helix pic from the Facebook contest - although since the photos seem to be missing I can't find the credit. I liked this one best because of the clever symbolism - unlock your DNA and unlock your future - sort of like a fortune cookie. The only difference is people like me hope that by unlocking our DNA, we'll figure out a way to change those fortunes.
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