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Who runs this group and website?
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This group and website is run by its members. Originally Rebecca Gaskin of
Oregon established a Yahoo! Groups email group whereby people interested in PNH
could share their experience and information. After Rebecca passed away in 2003,
the group as a whole took on the initiative to move to a web-based site.
This allows us to keep our conversations going, but also provides us with other features
including the WebLinks, Glossary, FAQ, Chat, Photo Album, posting of articles,
and many other features.
There is a Website Committee that is responsible for the day-to-day running of the site.
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| Who is on the Committee? |
| The Website Committee consists of the following people:
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| Who is paying for this site? |
| One of the members of the PNH support group is paying for the hosting of this website. |
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| Is this a moderated site? |
| No, posts are not moderated. |
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| How long will my account last? |
| We didn't want to have a lot of accounts hanging around for people who aren't actually
using the site. Therefore, inactive accounts will be removed.
If you do not log in to the site for 26 weeks, your account will be removed.
If you decide to rejoin later, no problem. You will need to contact
webmaster@pnhdisease.org to re-instate the account.
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| Do you disclose, sell or exchange your members list? |
| No. |
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| I want to get the newsletter... |
| The newsletter is published two or three times per year and is available in
the Downloads section for Members. To get on the mailing list for the hard copy,
email the editor, Melissa, at newsletter@pnhdisease.org with the following information:
Name
Address (complete with country) |
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| I have something to put in the newsletter... |
| There are a number of members who help out with the creation of the newsletter.
We are always looking for newsletter content. You are welcome to submit anything for
the newsletter to Melissa at mzlippy@yahoo.com |
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| Who pays for the newsletter? |
| Layout services are donated by Chris Valcik. Printing is donated by Health Care Association
of New York State Printing Services.
Newsletter content is coordinated by Melissa and other members for free.
For years the newsletter was paid for by private donations directly to the
editor to cover the mailing costs. In January 2004, the group obtained an
unrestricted educational grant from Alexion Pharmaceuticals to pay for the mail-outs. |
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| Do you disclose, sell or exchange your newsletter mailing list? |
| No. |
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| Why are we donating to AAMDSIF? |
| The Aplastic Anemia & MDS International Foundation, Inc. (AAMDSIF) is a
patient support group for Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS),
and related bone marrow diseases. PNH is a "related bone marrow disease". The AAMDSIF
has some literature on PNH. They also coordinate a fund that will go directly to PNH
research. It is called the "PNH Research Fund". If you wish to support PNH research,
you can contribute to that fund by clicking on the logo on the left hand side navigation.
Please make sure that you put "PNH Research" under "This gift is made in honor of".
That way the money will be directed to the correct fund. |
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