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December 2009 - Posts
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This is Dad's Christmas present. You'd never guess, but my Dad is very sentimental. I wasn't in the house two seconds when he was dragging me off to his study to show me some of my airplane drawings he'd framed and hung. I then knew that despite my pitiful Christmas budget, this couldn't have been a more perfect gift. This is supposed to be a T-38. My Dad flew them in the early part of his Air Force career when he was a flight instructor.
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We were all so tired after the shows. I don't know how Donna has so much energy. We were all worn out! Here's Carmen, having changed into her pajamas, callapsing and warming up by the fire. I tought the stone looked a little uncomfortable, so I told her to join me on the couch and share my quilt. The above photo is Carmen's head sticking out one end, and my head (with camera) is evily sticking out the other end.
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 After the last concert, we all went out to dinner. Again, my camera wasn't taking great photos with the limited light and this is the only one that came out. Five restaurants in Oyster Bay gave 10 to 20 percent of their proceeds to HPS for anyone's bill that mentioned the cause all weekend. This was one of those restaurants.
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I didn't take photos of the board meeting. I think I was too busy thinking about the actual meeting. We went out to eat after we met, and most of my pics from dinner came out very blurry. But, these came out nice! We were joined by some of our loyal HPS volunteers. You might recognise them from conference. What would we do without them????
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Carmen posted this to the HPS adults listserv, and with her permission, I am reposting it here. I think we should make it a holiday tradition. I would only amend that I personally don't want a magazine - thanks Carmen. What a head ache! I want a nice grant for the HPS Network that would allow us to hire the staff we need, and maybe give me enough of a stipend that I no longer have to spend time looking around for other work, or working on anything else. Just adding that so you know Santa!
Dear Santa:
I have been thinking verary hard about what I really want for Christmas. I know I am a bit late, but I wanted this letter to be perfect. I have so many things; I wanted nothing to be forgotten. Sorry for the long list, but I think you can handle it: Can you please:
1. Bring Heather her own magazine, so she can be the owner, editor-in-chief and that all the advertisers wanted to have spots in it. It will be the best magazine and it will bring the word about HPS all over the world (would it be too much to asked to be translated to 10 to 15 different languages?)
2. Can you get a scientist to develop an artificial lung!! Well and that our HPS'ers have dibs on it!!
3. Can you brings us a big donor, someone that really want to adopt the HPS Network and keep us under their wing (and if they can throw a gala a year for us that would be a great bonus).
4. Can you also get a sponsor that will pay Jo-tina and Renee at the Network's office, a full time position with some benefits, Oh that would be so nice!!!
5. Can you also manage to have someone come up with a great drug so we can have a new drug trial!! This time with no control group, so all can have the medicine?
6. Can you get us an apartment complex, if possible close to Dr Seward, so all our HPS people can live closer to each other and can have Dr Seward as their primary care doctor?
7. Can you grow the biggest grape tree so Nancy can never run out of wine?
8. While you are at it can you get Ana, Letty, Karen, Noel, Toby, Angie and Fran an unlimited credit at Starbucks, and by the way, Red will be a lifetime member!
9. For Chris, I want that the Boston Philharmonic will create a great Piece called Chris and would be the opening song at their Christmas concert!
10. Do you think you can manage unlimited air fare to anyone with HPS so we can fly to Canada and bake a cake with Sheena and then take the cake over to Waleska's pick up some coffee and go have a picnic with Paul?
11. Finally and if is not much to ask, I really want lots of health and good wishes for our two Marias (Maria G and Maria M) and for Janet and Wilson and for all my dear friends in the list, Emilio, Wanda, Sandrita, Gina, Julie, Diana, Shawn, Lisa, Matt, Yeydy, Yeida, Sandy , Kathlyn, My girls, Cristal and Candice and all my good friends (please forgive me if I left out your name, that is because I am getting old and can't remember it, not because you are not important. All of you are so very important to me that I really wish Santa was listening and was able to grant any of your wishes as well as mine.
I want to wish all my family in the list serve a very Merry Christmas, a great Holiday and a joyful New Year, I really hope Santa is listening.
PS and for me I really want the new 3G I Phone , if you still have space in the bag?
Hugs
Carmen
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Feb. 28, 2010 we will celebrate World Rare Disease Day – a day designed to highlight the unique issues surrounding living with a rare disorder.
Rare Disease Day got its start in Europe in 2008 by the European Rare Disease Organization. The National Organization for Rare Disorders began to sponsor the event in the United States in 2009.
In the United States a rare disease is any disorder that affects 200,000 or fewer patients.
This year’s Rare Disease Day will focus on the challenges of researching rare disorders.
For more information about NORD’s efforts for Rare Disease Day, visit: http://rarediseaseday.us/For more information about Hermansky-Pudlak Syndrome or any of the HPS Network's activities, go to: www.hpsnetwork.org.
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 I had to get a photo of this! It was just too funny. This is Carmen's son Christian. For those who can't see the image very well, on the t-shirt are ears of corn that are watching TV and they look very frightened. On the TV it says "Popcorn" and the T-shirt says under the picture, "Horror Movie."
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  After the concert Friday night guests were invited to the school cafeteria for treats and to see the crafts. Everyone seemed to have a great time chatting.
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Our friends at iGive are having a membership push for the next 24 hours - until midnight central time tomorrow Dec. 17th. If you don't already belong to iGive, go to their site at the link below, join, and do a single search using their search engine. We get $1 for every person that does this, up to $5,000. Please copy and help get the word out! No purchase is necessary. It's a pretty easy fundraiser if we mobilize quickly and everyone follows through. We have another fundraising opportunity. For every new person that joins iGive with the link below and does a single search on their search engine, we'll get $1 up to $5,000. Please help us. No purchase is necessary. Please help us get the word out - we only have a short window. This letter exiplains how it works:
Thanks for helping us!
Hi Heather,
We know that many causes have had a hard year, so we'd like to try something new tohelp Hermansky-Pudlak Syndrome Network that requires your participation, but is free and definitely easy.
iGive.com is going to attempt to donate $5,000 in just 24 hours to Hermansky-Pudlak Syndrome Network and other causes. For each person who joins iGive using the special link below and does just one web search on our site between now and noon Thursday, we'll give Hermansky-Pudlak Syndrome Network a dollar.
5,000 new members, $5,000. No purchase necessary.
Of course, if they search more (or buy something) they'll earn even more money for Hermansky-Pudlak Syndrome Network.Right now, we're donating $.02 per search and a bonus $5 for that first purchase plus the usual percentage.
Here's where you come in. The only way Hermansky-Pudlak Syndrome Network will get new supporters and that free $1 (or more) is if you invite them. Send your friends, family, and colleagues the following link in an e-mail, tweet it, do a Facebook posting, put up posters, shout from mountain tops (you know the drill) and let them know you think Hermansky-Pudlak Syndrome Network is pretty cool and deserves their support, especially since it's free! You can even just forward this e-mail.
This is the link: http://www.igive.com/welcome/warm_reg_promo.cfm?m=427355 We're really proud of our search capability, powered by Yahoo! We've made tons of improvements over the past four months, so we want lots of people to try it out and put it to the test. If they keep on searching or shopping after testing us out, so much the better for Hermansky-Pudlak Syndrome Network and iGive.com.
The details: - Offer active between now and 11:59 a.m., December 17, 2009 (Chicago time). - New members only (never have been an iGive member previously). All the normal rules of membership, searching, and purchasing apply, our site has the details. - Once we've given away $5,000, the offer ends.
That's it. Don't forget to try our search yourself (http://isearch.igive.com). You may need to login first.
From our families to yours, we hope you have a great holiday season.
Yours,
Robert N. GrosshandlerFounder
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