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Cesily Ramos, author of the just-released book Embracing the Mystery, is donating $5.00 from the sale of each book to the Hermansky-Pudlak Syndrome Network. Embracing the Mystery is a collection of Ramos’s personal reflections and poetry inspired by her...
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Now is the time to get your entries in! Send the HPS Network five names and addresses, or five e-mails and their real world names, and for every batch of five, you’ll be entered in this month’s drawing. Send them to: info@hpsnetwork.org. The names are...
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A capital campaign is a vital fundraising activity for many non-profits. The HPS Network does our capital campaign every year around the holidays. It stands to reason that people who know those of us with Hermansky-Pudlak Syndrome would be the most willing...
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This painting has now been sold. The proceeds are on the way to New York for the Hermansky-Pudlak Syndrome Network as I write this. Yeah! I'll post the paintings still for sale in a bit. Thanks everyone for the support!
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Carmen Camacho is the June winner of the HPS Network’s Names for the Cure contest. She submitted five names and addresses to the capital campaign database and won a $10 gift card from Starbucks. Congratulations Carmen! In July contest participants are...
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Above is a small watercolor (7 by 9.5) painted on cold-press paper. I painted it while I was at the NIH recovering from my lung lavage. I'm selling it to benefit the Chediak-Higashi Syndrome fund. CHS is a cousin disorder to Hermansky-Pudlak Syndrome...
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Join the Names for the Cure effort to help raise money for the HPS Network. We want to expand our capital campaign database with quality names. Those most likely to respond to a fundraising letter are, of course, the people who know us and love us the...
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This is my most recent painting. I tend to paint in a tight manner as if I were trying to do realism, which I'm not - thus I've been working on "losening up" a bit and trying to paint in a more impressionist style. I'm adding this...
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The HPS Network is launching the Names for the Cure program to help develop the mailing list for its annual capital campaign. Names for the Cure will be a monthly contest with a gift card prize every month. The first drawing will be held June 30th for...
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The singing duo of Candice and Crystal Sipe, otherwise known as Angels in Voice, held their 11th annual Hermansky-Pudlak Syndrome Network benefit concert April 16 at the Thomas Road Baptist Church, 5735 West Thomas Road in Phoenix.. They raised approximately...
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This is also a 12 by 16 (or 16 by 12 - you get the idea) acrylic on canvas board. I'm also selling it to benefit the HPS Network. It's $150, a bit more expensive than others, but it took more hours to paint than some of the others too. If I sell...
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I wish I had a better way of photographing these. This is a 12 by 16 acrylic on board canvas. It's a garden scene and was a bit of an experiment for me - a technique I need to work on a bit more. I'm selling this one for $50 to benefit the Hermansky...
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Today Donna, Renee and I finished a grant application. Say a few prayers that we are awarded this grant. It would help to cover some (but not all) of the bills for conference. It would also help us fund continued outreach in New York. (This grant money...
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One of the games I created for the Price is Right involved guessing how much we could make if every member raised a given amount of money. Too often people think they have to do a major project for it to be meaningful. While I'd never want to discourage...
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