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» LymeNet Flash » Questions and Discussion » General Support » LYmeNet team response to your questions

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Author Topic: LYmeNet team response to your questions
bstolow
Founding Member
Member # 85

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Jill,
Thanks for consolidating all the questions. It is clear that you put much time and effort into doing this. Our answers to the summarized questions appear below. I did not include all of the original posts that you provided to save space.

PUT UP A FUNDRAISER PROGRESS BAR AT TOP OF EACH FORUM SO EVERYONE (NEW AND VETERAN) WILL KNOW THERE IS A FUNDRAISER AND HOW FAR WE ARE FROM OUR GOAL:

Good idea, we can do this.

NEWCOMERS NEED TO KNOW WHAT IS GOING ON (many have no idea that Lymenet runs on donations):

The explanation of how we are funded does appear at the bottom of the front page of LymeNet. We realize that very few if anyone actually goes down the page that far. We will move this very important general request for funding to the top of the page. Perhaps we will repeat it on all the pages. But, we have to see how this looks; it could become annoying to keep seeing.New registered members do get an e-mail with their user name and password. We can include a statement in this e-mail explaining how we are funded and request a donation.

SEND EMAILS TO EVERY SINGLE MEMBER (INCLUDING NEW MEMBERS):

We have sent e-mails to all registered users the past three annual fundraisers. We will do this again this year.

ILADS, LDA, BOWEN, IGENEX, MDL, LLMD'S, etc SHOULD BE DONATING AS THEY RECEIVE MANY REFERRALS FROM THIS SITE:

Getting paid for referrals is a Pandora's Box. I recall several IV companies a few years back that were paying for referrals from Lyme Docs. The Government had big problems with this......

HAVE CORPORATIONS DONATE:

We receive donations through United Way, if you have it at work, sign up and designate LymeNet. We receive matching gifts from corporations, if you have it at work, sign up and designate LymeNet. There is a common thread here. If you are working, ask your employer to make a donation to the organization that helped you or your family member get better or to become functional enough to return to work.W

HAT ABOUT ADVERTISING (individuals and/or companies)/AFFILIATES?

We already receive a commission on sales from Amazon.com purchases that originate from the button located on the lower left of our homepage. It does add up and we are paid quarterly. A few years back a medical student was kind enough to purchase a textbook that cost $450! We receive a 10% commission. Buy all your books; they don't have to be Lyme related through our Amazon.com button! I will be sure to make this much clearer on the homepage. We have to be careful not to endorse private enterprise on our website. Also, there is limited space for the many hot buttons that can be placed. We believe Amazon.com is the biggest and they are very careful how they manage their affiliate program and whom they deal with. As for Ads. Do you remember how nuts you got when the flashing ad danced across your screen? You would not believe how much time it took to filter out all the sex, cigarette and insurance company ads that none of us really want to see on the site. After all the filtering, they still managed to sneak in a few pop up's. All in all, the little money we raised from ads was not really worth the trouble. At your request, the ads were removed. -

OTHER IDEAS ON HOW TO RAISE THE $7500

Many of the suggestions listed under this topic required people to spend many hours managing inventory, placements, advertising and marketing which all sounds great but we don't have the man-power to process the orders. Our strength has always come from within. We fight this disease everyday, one on one. We try not to allow Lyme to run our lives. Our funding must also come from within. From within our community and our hearts. It is just that simple. The fact is our community is too big. But that also means there are enough of us out there who are in the position to keep the LymeNet lights on for those who can not afford it.

QUESTIONS:
1) I have eliminated all computer and technical questions here as Tom Brown has answered them.
(2) What activities necessitate office supplies? It sounds like Lymenet is involved in activities beyond running the message board, and I am curious to learn what they are.

We began as a local support group and grew into a worldwide information service. We still get requests for information from people who do not have access to a computer. Although we no longer take phone calls (we recently eliminated the LymeNet phone) our name and address does appear in many publications, so people do write, and we respond by printing and sending packets of information that appear on our site. The office supplies are a very small expense.

(3) What kind of government fees are being paid?

They get their fingers into everything. For example, there is the annual report to the NJ State Treasurer ($25 please) telling them we still exist. The Consumer Affairs Commission gets $25 a year to allow us to be a non-profit.

(4) Why are there five domain names? Also, $20/domain is high. There are less expensive options. I've seen as low as $4 out there. I realize this is a small amount, but we should be saving money wherever possible. Many years ago we secured all of the domain names for LymeNet. This includes .org, .net, .com along with lyme.net. It was good planning and copyright protection. It is our intellectual property. -

TROLLS, etc: � I think Lymenet also needs to have a policy on what should be allowed in the medical forum, and then put what they define as alternative in an alternative forum. And anything that's way out there and fraudulent shouldn't be allowed. You should have a board and decide where the lines are being drawn.

We have rules and conditions for registering and posting. You have to agree to them to register. We are working to insure that the problems in July do not happen again.We have been discussing new forums such as ``Alternative Approaches to Lyme''. We want to incorporate the additions when we go live with the upgraded software. I think more suggestions from the users on the type of topic divisions you would like to see is needed. The far-out or fraudulent medical stuff that appears from time to time gets your brand of peer review. You, the users of Flash and LymeNet, are pretty smart folks. If statements are made that you feel needs attention, please notify one of the moderators. Lou B. will be working to train moderators as soon as he can free up some time. At our Friday night meeting, we discussed ways to correct previous problems and improve our service to you. Stay tuned as we begin to implement them.

Thank you to those of you who have sent donations and your kind words of appreciation and support.

The LymeNet Team I


Posts: 133 | From East Brunswick, NJ USA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
Member # 81

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Many thanks for your hard work and your willingness to explain. What I know about computers would fit in a teaspoon, so I have no comments at all to make on the system. Just glad someone is doing this for us.

When I remember back to the problems Lyme Alliance had getting help and contributions, it was the case that people had a lot of ideas on what should be done, but they wanted someone else to do them! Guess that is typical in any voluntary effort.

And I notice that some people only come to lymenet to complain or ask for help, forgetting that it is a self help group, and they need to contribute their time to help others. If you want value in self help groups, you have got to add some value yourself.

My only other comment is that I take my hat off to the people that started lymenet and have kept it running all this time. And to other members/readers/posters: "Ask not what lymenet can do for you, ask what you can do for lymenet."

I personally trust the judgement of those responsible for this forum to sort out the technical things and do the best job that is possible. Think that too much second guessing could be discouraging for them. If there are any super experts out there who think they can contribute a better idea, maybe it should be done privately, and in a way that does not require great long explanations or justifications. Or maybe forum members could pick up some of the slack for answering these questions from newbies. Maybe this is a place for a FAQ.


Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
bg
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Jill, thank you also for the labor of love of combining everyone's comments into ONE post!


Thanks Bill for the update on things.

bettg


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JillF
Frequent Contributor (1K+ posts)
Member # 5553

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quote:
Originally posted by bstolow:

We already receive a commission on sales from Amazon.com purchases that originate from the button located on the lower left of our homepage. It does add up and we are paid quarterly. A few years back a medical student was kind enough to purchase a textbook that cost $450! We receive a 10% commission. Buy all your books; they don't have to be Lyme related through our Amazon.com button! I will be sure to make this much clearer on the homepage. We have to be careful not to endorse private enterprise on our website. Also, there is limited space for the many hot buttons that can be placed. We believe Amazon.com is the biggest and they are very careful how they manage their affiliate program and whom they deal with.


Aw man. I didn't notice this about Amazon! I just bought a new $157 stroller and a backpack for my son last week!!!!!


Posts: 1485 | From USA | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
duramater
LymeNet Contributor
Member # 6480

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Re; AMAZON. I never go to the first page as I have a link to the discussion areas, thus I never knew about the amazon link. Perhaps this is a MAJOR thing to publicize. I grab stuff off of amazon often and and it would be super easy to do it through the link here. Will do so in the future, but perhaps (A) that is something that should be broadcase AND put in the mail asking about donations and (B) can the amazon link be put on all the discussion pages

<----- over there with all the other clickable links?


Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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quote:
Originally posted by duramater:
Re; AMAZON. I never go to the first page as I have a link to the discussion areas, thus I never knew about the amazon link.

Me either!!!!

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


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beach4so
LymeNet Contributor
Member # 3832

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Well now I don't feel so stupid. I didn't know that about amazon either. I thought it was only for book about Lyme.

I do alot of shopping on Amazon so hopefully this will be a big help.

Thanks for all the hard work, without Lymenet I hate to think where my family would be.

Starr


Posts: 698 | From Louisiana | Registered: Apr 2003  |  IP: Logged | Report this post to a Moderator
bstolow
Founding Member
Member # 85

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Our current bandwidth is 385. We are going up to 1000 bps.

Bill


Posts: 133 | From East Brunswick, NJ USA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
tickedntx
LymeNet Contributor
Member # 5660

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Hi Bill:

Thank you. I've submitted that information to WowBB to see if they still think they could host Lymenet.

I will let you know when I hear back from them.

Suzanne


Posts: 977 | From Austin, TX, USA | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
   

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