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end of year thanks


geneva
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I know last week many posted words of appreciation to those at DINET who provide this wonderful forum where ideas and experiences can be shared and friendships with people who understand one another are formed. Then there is the Meet others program and newsletter and I am sure more behind the scenes work.

Michelle, while you are not one to ask often for funds I think we all recognize there are operating costs required to keep DINET up and running. I recall that you posted receiving donations covering 2004. What can those of us who are able do to help with 2005 operating costs...what amount is needed?

Michelle, you and Nina in particular have made this a safe and wonderful place for so many to come, share ideas, and find comfort. While it is impossible to guess how many lives you have touched around the world, I am sure it is many and you should take great pride in that accomplishment.

So, as 2004 comes to a close I just want to say Thank YOU for another good year!

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Ditto! This forum is so helpful to me. I have learned so much by reading about others' experiences with symptoms and treatments. I think I learn something new each week, still--even after using the forum for a whole year! And I love having the opportunity to share my experiences with others, in the hope that their journey with POTS will be a little easier because of it.

One thought I have is a suggested annual membership fee. No one would be required to pay it, but it would just be a suggested fee to cover costs of operation. Those of us with the means to pay, who are using the forum frequently, would. I would even more strongly suggest this, if you are having any difficulty covering basic costs. Many of us would like to know, if this is the case.

Katherine

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katherine,

i think that is a good idea...

it does create a little more work though i would think...i know that the cfids association suggests maybe a $25 fee a year and it really makes me stick to it b/c they remind me to pay up! they, of course, make exceptions for financial needs and you can still get the mailings and such. also, for a while, ndrf had a thing where you could charge a certain amount to your credit card automatically every month or 3 months or something like that. i liked that idea b/c even $5 every couple of months from many people adds up fast.

still, i don't have a clue what goes in to creating and setting up such a thing...time, time, time, and money probably! so, i hate to even mention it!

also, DINET is starting up a fund-raising committee so hopefully that will take off in 2005! i hope the bracelets are a big success as the first fund-raiser.

geneva, hats off to you for posting that! every day i think...how can i help this site? how can i give more back to the cause? how can i make the world better for people with POTS? DINET is like little miracle to me every day...this amazing testament to what people can do with adversity.

okay, feeling POTsy...gotta go!

emily

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I was thinking something very simple and not time-intensive--like, we suggest this cost per year and here's where you send the check. I truly think that those of us who can pay (and I know many of us are in difficult financial situations, but not all of us are) and who value and regularly use the forum would do it. It would be a boost, that's all!

Katherine

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Thanks to all of you for thinking of DINET. I really appreciate your willingness to help. :) Yes, there are lots of little costs behind running this organization. I will sit down and write something up this week.

I have thought about charging a membership fee to access information like the EDS site does, but more so I want the information to be available to anyone who might stumble upon it...as many of our members have. The idea of a suggested membership fee is a good one, and I will work to implement it into the site.

Thanks again for thinking of DINET. I'll get working on that list....

Michelle

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Hi Michelle,

I so agree that it is very important to have free access to all information for this illness and those who stumble on the site. I worry that some people might not pursue all that is available to them either because of lack of funds or not wanting to pay for something in advance "sight unseen". It would be heart wrenching to know that someone couldn't access information easily that might change their lives literally.

Katherine, I like the idea of suggested membership but worry that it could potentially reduce those who participate. Also, from Emily's email, I would hate to know that someone's "job" would be collections....yikes!

In my opinion I think DINET is great just the way it is -- free and available to all. I would hate to see it change. So, if there are others who feel the same and are in a position to help, I support donations. Perhaps when Michelle you let us know what is needed, those of us who can will respond with commitments and you can see if that covers expenses or 2005.

ok, just my 2 cents worth!

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  • 1 month later...

Ok...I know it's been a while (been crazy busy), but here is the list of some of DINET's needs:

-Website & Forum. The website is $180. a year. Multiple domain names are about $85. total a year. The forum is $108. a year.

-ISP. So far I've paid this out of my own pocket. $50. a month

-Supplies. Those pencils/pens/paper/print cartridges/stamps etc. add up quick. Guessing around $250. this year.

-Postage. On starting DINET we estimated around $900. a year would be spent on postage. This included the mailing of educational brochures, which we will be doing this year.

-PO Box. $24.00 a year.

-Obtaining research articles. I go to a medical library every few months to get the latest publications. Copies cost about $25. each time, for a total of around $100. a year. Sometimes the library I go to doesn't have a particular article, in which case I have to purchase it from the publisher. This usually costs around $15 per article. Guessing I would purchase around 6 articles a year if I had the money...that would be about $90.

-Software additions and upgrades. Around $200. a year.

-Newsletters. I'd still like to print hard copies of the newsletters, but we haven't had the money to do it. About $1,000 a year.

-Computer. A Laptop would be great as I could get work done on the go....and I am always on the go. Prices vary, guessing around $1,000.

-We also need to have emergency funds in case something breaks, etc. $1,000

That puts us at $5,537. needed this year.

If any of you can help with these needs DINET would be very grateful. Although we have many members we really don't receive many donation....which can be a little discouraging at times. Please help if you can. Donation information is available at: http://www.dinet.org/how_you_can_help.htm

Thanks!

Michelle

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Thanks Michelle for providing an annual financial report, of sorts. I am sure most of us have little idea of how much volunteer time and money goes into keeping this forum and information source going. (Is this a non-profit organization, btw?).

I hope that all who can afford to pay a reasonable "membership fee", will do so now!

Thanks, Katherine

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Yes, DINET is a registered nonprofit organization--DINET is a 501©(3) organization. Donations are tax deductible according to IRS regulations.

We are listed with Guidestar, the nonprofit data base. http://www.guidestar.org/controller/search...npoId=100231178

this is our information as it appears in the Guidestar record:

Dysautonomia Information Network

PO Box 55

Brooklyn, MI 49230

The Dysautonomia Information Network (DINET) raises awareness of autonomic nervous system disorders and provides dysautonomia education, support and networking.

EIN: 27-0047290

This organization is not required to file an annual return with the IRS because its income is less than $25,000. It is a 501©(03) public charity. Information in this report was supplied by the nonprofit organization within the last two years.

How to Help

This organization is seeking funds from contributions and grants. These funds will be used for unrestricted operating expenses and special projects.

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michelle,

what a huge undertaking! i do not know how you do it...

i asked my dad and stepmom to donate to dinet for xmas...but i don't know if they did...i will make sure he does it! ;) (he gets a little sidetracked sometimes!)

thank you for making that list. i know that it was an eye-opener to me how much money it takes to keep things running. i knew it was costly, but whew! maybe it will help encourage folks to donate?

anyway, just another chance to say kudos to you.

emily

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Michelle, Were you thinking that you wanted to send hard copies of the newsletters to folks registered w/the forum? Or did you want to send them elsewhere (presuming you had the funds to do so)? I was thinking that maybe there could be some way when people sign up to request print or electronic copy of the newsletter ... and for those already online, well, I guess we could survey folks to see what they'd prefer. (I for one wouldn't want a paper copy; I can print what's online if need be.) Anyway, this is just a thought ...

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Hi Merrill,

I'd like to be able to send hard copies of the newsletter to all DINET members (those who have filled out the join form on the DINET site). A hard copy newsletter is a great way to educate others about dysautonomia....you just never know who might pick it up.

Sometimes I have people contact me for other people who don't even own a computer. So these people would especially benefit from a hard copy of the newsletter. I'd also like to send them to doctors' offices for "something to read" in the waiting room.

Take care,

Michelle

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michelle,

i very much like the idea of a hard copy. i find that reading online is very difficult for me and i do it only to be here and on email. i really would like a hard copy.

as for the newsletter? in terms of printing it...is there a way to do it in one fell swoop or must i just print it in parts? just wondering.

yeah, i like the spa idea too! we could have stuff that was set up so that we could recline while getting a manicure! :lol:

emily

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Hi Everyone:

Just wanted to chime in and agree that Michelle, you are a wonder!, and that we should all donate if we can.

I've just volunteered to join the fundraising committee as well...any other takers? I'm not sure about the time it would take, but what a worthy cause!

Thanks everyone for your participation in this fabulous group! Discovering DINET and this forum has truly changed my life!

Kristen

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Kristen! Yes, I am on the committee too and am so excited about it. I have wanted to give something back so badly. I have so many ideas floating through my head I can't wait! After this junk with me and you settles down a bit and we find out who else is on the committee...and of course, get michelle's approval...let's definitely start talking about it! I am excited to work with you! :rolleyes:

Michelle, thanks...a printer friendly version is a good idea.

I noodged my dad today to make a donation as he didn't 'get around to it yet'...so i am working on it!

How did the bracelet sales go overall? Are there still a lot left? Did you break even?

Okay, I am so antsy for my test results I can't rest very well. Grrrrr...

Emily

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Em, yes, we did better than breaking even on the bracelet project! I got paid back for all my out-of-pocket (okay, out-of-credit-card) expenses, and on top of that we made a nice amount to keep toward the ongoing service of DINET.

In fact, we only have a few bracelets left--maybe 20 or so, before we're done selling this batch. Pretty neat! :angry: Nina

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Hi guys!

Emily, rest assured that I picked up my mail today and a donation was in there from your father. :angry: I will send him a thank you. I also want to thank you for encouraging him to send the donation. You really are a sweetheart.

And for those of you who have joined the fundraising committee...I still have to get in touch with two members that I haven't been able to reach. Hopefully I'll be able to get in touch with them this week. Have to get in touch with Nina too. Then maybe we can all set up a time to chat and exchange ideas.

Nina, hope you will be sending a picture of yourself drowning in bracelets for the next newsletter. You truly are an amazing person to take on this fundraising project all by yourself and see it through to the end. They don't call you MightyMouse for nothing...

And Geneva, thank you for sending in a donation and for posting this topic in the first place. You've been good to us, and I am eternally grateful.

Best wishes,

Michelle

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i am absolutely THRILLED that the bracelets did so well. i forget how many you ordered...but it was a lot! ;) what a great accomplishment.

michelle...i am glad he got that done! he's such an absent-minded professor.

as for fund-raising...keep me posted of course. i think i'll be ready to roll after i get this darn gallbladder out.

emily

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