Please REad Letter form Dunkle at NORD

[Guest guest]

Dear Group,

I have been in touch with at NORD. She has in her latest email

outlined how we may begin collecting for EN research through NORD. It

is rather informal. However, it a two step process in that you must

alert NORD that the funds you are sending is to be set aside for EN

research. Our goal would only be $5,000 in the first two years. In he

meantime we may have found an attorney to help set up the EN Foundation.

Funds sent to NORD for EN research are tax deductible to donors.:-)

I will be happy to make a " cover letter " on our Group site which we

can either download and email to or print out and send to her

with our individual checks.

I need some feed back on this, Group. It's your call. I personally

like partnering with NORD. It will make funding EN research so much

easier for us. They are established and have a team of 15 expert

doctors to choose who gets the grant. We don't have the medical

expertise to select a researcher. That money must go to the best

researcher not the one who can bamboozle us with fancy words. If you

read my friend Terry's email to me, which I posted this weekend, you

will see what I am talking about.

Here is 's email to me:

**********8

,

You're not a pest at all. Here are answers to your questions:

1) You don't have to set up an account beforehand. Just tell your

members to begin sending donations to NORD with a cover note (if they

send it through the mail) telling us that the donation is for the

erythema nodosum research fund and that they are members or friends of

your group.

2) It isn't possible to specify on our web site that a donation is for

a particular disease, but people can make a donation and then send an

email(to me or to NORD's orphan@... address) telling us

about the donation and that it is to be earmarked for this particular

research fund.

I or one of my colleagues will send an email confirming that we have

directed the donation to that fund. (If they don't receive such an

email,they should call us to make sure we got their message.)

3) If your organization is not yet a 501©3, donations made to your

group won't be tax-deductible. For that reason, it's probably better

to send donors to NORD for now. If you're thinking of applying for

501©3 status, we would encourage you to begin that process when you

can, and we'll be happy to answer any questions related to that.

4) We would also encourage you to try to raise at least $5,000 in the

first two years, if you are sending the money to NORD. Otherwise, if

it's less than that after two years, it will get diverted into a

general research fund unless you notify us that you are still actively

fund-raising and still have hopes of being able to fund a project.

Hope this helps. If you do decide to go ahead with this, please let me

know so that I can tell the people who receive donations about it.

Also, if you do ultimately obtain 501©3 status, I hope you'll give

some thought to becoming a NORD member organization (or associate

member organization).

There is information about this on our web site. We would love to

have your group in our " family " of organizations.

Sincerely,

Dunkle Vice President of Communications National Organization for

Rare

Disorders 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Phone:

Fax:

http://www.rarediseases.org