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Help out the HPS Network board of directors

At the HPS board meeting, we had two lovely lady guests who are interested in helping us improve our public relations and fundraising efforts. One owns her own public relations firm and the other is a professional fundraiser for another non-profit. She's a friend of an HPS family and would like to help out.

We had a long dinner discussion with them about the Network and they asked us several questions about our goals etc.

As part of the process they're helping us with, we'd like to get the feedback of those in HPSland about the following questions. I'll explain the purpose of the exercise after all the results are in - I don't want to affect your answers. You're welcome to answer if you're in any way part of the HPS community - an HPS'er, HPS sibling, parent, or even friend or supporter. You can answer by posting to the comment section, or you can e-mail me your responses at: hkdawn@yahoo.com.

I've also posted these questions to the listservs, but I know several blog readers don't belong to the listservs. Thanks for the help!

Answer briefly. Brief answers are actually better for this.
1. Who is the HPS Network?
(Not the disease, but the Network.)
2. What are four words that come to mind when you hear of the HPS Network?
3. Where do you see the HPS Network in the future?
4. What's the most important thing you get out of the HPS Network?
5. What areas do you feel need more attention?
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Comments

Anonymous said…
1. Who is the HPS Network? (Not the disease, but the Network.) The HPS Network is a group of tireless people who mainly volunteer their time to make known the HPS Disease, try to find funding for research for a cure for the disease, and to give support to those with the disease and their families.

2. What are four words that come to mind when you hear of the HPS Network? suffering, pain, hope, love

3. Where do you see the HPS Network in the future? Unless people take a deep and untiring interestin the HPS Network, I see it flagging. Nobody can continue at the energy level that some of these people do, and some are ill. Also, funding must happen to make this network viable and able to continue, perhaps even with paid staff.

4. What's the most important thing you get out of the HPS Network? I find inspiration in the HPS Network because of the untiring hope and efforts made by these people. I get a sense of love that is often found nowhere else.

5. What areas do you feel need more attention? I am sure that funding needs more attention, but the ability to help in finding a cure. But also, I suspect that a very important need is continued discovery of those who go undiagnosed because the disease is still not visible enough on the radar screen of medicine.
6:12 AM
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