posted
Hi, A little angel in my life has set up a fundraiser/blog for me to update my loved ones on my progress. I was thinking about posting a link here, but I am not sure because my real name is on the blog. So, should I post a link anyways, or should I take my last name off the blog? Or should I skip it entirely, although it would be nice to connect my Lyme world and real world.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey searching...
I advise strongly- insist actually, even though I have no right to do so- that you have the last name removed from the site before posting your blog- which, by the way, I'd love to see!
Could be no problems ever, but if you do have one- or your doctor does- it could be very destructive.
If you do have a problem, at that point it is too late to make the change.
posted
thanks. You said exactly what I was thinking. It was hard to even be willing to put my story out there for the whole world to see. I am generally a pretty private person. The anonymity of this site gave me the confidence to be willing to post here in the first place. But honestly, once I got my story down on "paper", I felt a tremendous relief. As if I told off the person I have been fuming about for years. There is no person actually... just a hypothetical person I have been fuming at. I will share the site soon.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Posting a link to a blog is fine, but not if money is made off it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
That's a bummer. But I totally understand. Its a slippery slope. Glad I asked. Moderators, please let me know if there is a way to share. maybe I just have to wait until the fundraising part of it is done.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tincup's suggestion to omit your last name, Ditto.
Will this be accessible to the public? If so, Everything you post, you need to think about how you will feel about that basically - forever. If you have kids - or will - how will they feel about what is posted?
Just how private or controlled can you keep this? There are some very real considerations with going public. Some folks can do that; others can't. For various reasons.
There can be another way if you go through a current 503(c)3 (I think that is the code given to non-profits or not-for-profits). They can earmark certain funds for certain recipients, sometimes.
Do you really want all your private thoughts out there? Be sure to think about how everything you say might be interpreted. Have several good friends edit what you write before you post it.
Your personal safety, address, etc. . . . also to be considered. Insurance coverage now & future. Life insurance, too. Many have had life insurance cancelled due to lyme. I did.
My concerns are just with your security as once something is out on the web, you often have no control. Still, with all that considered, I do hope this is an enjoyable experience for you.
One major consideration: If in Oregon . ..
I see you are in the Pacific NW. Now, you need not say where but know that, if in Oregon and if this blog is public access . . . the official medical stance in Oregon is that there is no lyme and, especially no such thing as chronic lyme.
You say this is a fundraiser. If in Oregon and, if you incorporate any local media, you will need to prepare to be countered with the official IDSA stance on this in Oregon.
In the past, I've seen a few with lyme who went public just get clobbered in the local media. Just clobbered. It's important to know this can happen and side-step if possible with solid information links, etc. -
[ 02-13-2012, 03:14 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, like always, you have very good opinions, and certainly gave me something to chew on today. I will have people look everything over, just to make sure there is nothing on there that might be misinterpreted. I think its ok so far. I was really thoughtful when I wrote it, and when I edited what my Mom wrote, with the thought that it will be "out there" forever.
I am not going "public" with this, as in not contacting any local media. Besides the fact that anyone can read it, it is really for family and friends. My last name, my family's names are not on the blog. I hope that this is sufficient. I do not have insurance.
I know it is a risk, or at least it feels like it is one. My family/friends really wanted to help, so I agreed to let them. I NEED assistance with my treatment, so I feel like I have no choice but to do this fundraiser. I will keep everything you said at the front of my mind though, so thank you.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Most people I have seen do fundraisers do so on Facebook.
It is a lot of personal information put out there.
The last one I saw did an auction style, where people bid on goods that were collected by friends.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
It's wonderful that your friends and family want to help!
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Most people I have seen do fundraisers do so on Facebook.
It is a lot of personal information put out there.
The last one I saw did an auction style, where people bid on goods that were collected by friends.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Might be a misunderstanding here?
I believe Searching4truth can post if it is a fund raiser. We do it all the time as the need arises. We've had walks/runs to raise money, BBQ's, sick kids fund raisers, patients needing a doctor, horse shows to raise money, fishing tournaments to raise money, fancy banquets or whatever Time for Lyme calls them (galas I think?), etc.
Remember the fund raiser for a patient from England that was posted here several years back? She needed money for meds and we all helped. TuTu MAY remember that one, but it was maybe before Goofy was here.
I remember only because I called the bank in England to be sure it was legit before I would support it. It was my first call over seas too!
From what I understand and I am not a moderator, the rules are not meant to exclude a fundraiser for a sick patient or to make money for Lyme research, only to stop people from selling unrelated products or services.
Here is the rule... look at the bottom lines.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
4. Users shall not post or transmit through the LymeNet System any material which violates or infringes in any way upon the rights of others, which is unlawful, threatening, abusive, hateful, harassing, knowingly false, defamatory, sexual oriented, invasive of privacy or publicity rights, vulgar, obscene, profane, or otherwise objectionable, which encourages conduct that would constitute a criminal offense, give rise to civil liability or otherwise violate any law,
or which, without LymeNet's express prior approval, contains advertising or any solicitation with respect to products or services.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Of course what the moderators say goes 100% and we do not argue, but I do hope they can double check and let us know in this case if it is ok.
posted
Jenifer is taking a look at it for us. Fundraisers for groups have always been allowed, but I don't remember any for an individual.
If we did that, we'd have them all over the place.
Let's see what Jen says.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"If we did that, we'd have them all over the place."
True. But we'd surely hope as a result our members could get a little help from their friends by doing it.
A good thing, right? I would hope so.
Actually, there are multiple posts by and for individuals (not groups) in the list above.
NOW LISTEN TO ME YOU GOOFY and OTHER MODERATORS...
I am not arguing, just trying to recall what was done in the past, and realizing how important it is to get our members help as/when needed. If we can't do it here, we can't. I understand that. Glad you are checking with Jen for a final pow-wow decision.
So don't be getting your toes in a curl or your britches in an uproar with this back and forth with me. Did I make myself clear?
I'd hate to have to call the local chocolate factory and have them put you on their "ban" list.
posted
well, thanks tin cup for doing all that research! I am looking forward to hearing the answer.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
But those are "advertisements" for fundraisers held in physical locations... not on a blog. To me, it's different. And maybe those flew under the radar and we didn't notice.
-
PLEASE DO NOT CUT OFF THE CHOCOLATE FACTORY... PLEASE!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I got clarification from Jenifer, she said no fundraisers for individuals. It's different when it's for an organization ... and organization fundraisers go in activism.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you for looking into it for me. It really is too bad, but I totally understand. And yes, I took my name off of it.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Darn. Too bad. But glad you know how the moderators will treat this situation now. Maybe one of the other support group sites can help you with it, searching4?
If you'd like, send your info to me, and if it passes the sniff test, I'll share it by email to groups and individuals. There are private boards too where it can be posted.
We have a number of Lyme kids and adults on the Caring Bridge site that we follow and assist. Is that where your site is located?
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It's kind of hard when nearly everyone with a disease is in need of funds. Just a thought, maybe look for a place to post where not everyone has Lyme? My thinking is that so many are so strapped financially from this disease that other Lyme patients might not be the best place to try to raise funds from.
I know there is a HUGE Facebook group of Lyme patients. You might consider sharing there. There are so many that a lot of them have a separate Facebook profile just for their Lyme friends in order to keep it for support group purposes.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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