User talk:Jennifermccullough1

January 2010 http://.crdnetwork.org
This is the only warning you will receive for your disruptive edits. The next time you insert a spam link, you will be blocked from editing Wikipedia. Spammers may have their websites blacklisted as well, preventing their websites from appearing on Wikipedia. Wuh Wuz  Dat  19:56, 4 January 2010 (UTC)

Your account has been blocked from editing Wikipedia because it appears to be mainly intended or used for publicity and/or promotional purposes. Please read the following carefully.

Your account's edits and/or username indicate that it is being used on behalf of a company, group, or organization for purposes of promotion and/or publicity. You have violated one or more of our rules, including rules against adding inappropriate external links, posting advertisements, using Wikipedia for promotion, and editing inappropriately with a conflict of interest. This kind of activity is considered spamming and is forbidden by Wikipedia's policies. Although Wikipedia has a great many articles on companies, groups, and organizations, it is considered inappropriate for such groups to use Wikipedia to write about themselves. In addition, usernames like yours are disallowed under our username policy.
 * Why can't I edit Wikipedia?

Probably not. See FAQ/Organization for a helpful list of frequently asked questions by people in your position. See Conflict of interest for the kinds of limitations you would have to obey if you did want to continue editing about your company, group, or organization. If this does not fit in with your goals here, you will not be allowed to edit again. Consider using one of the many websites that allow this instead.
 * Am I allowed to make these edits if I change my username?

You are still welcome to write about something other than your company or organization. If you do intend to make useful contributions on some other topic, you must convince a Wikipedia administrator that you mean it. To that end, please do the following:
 * What can I do now?


 * Add the text below this message box.
 * Replace the text "Your proposed new username" with a new username you are willing to use. See Special:Listusers to search for available usernames.  Your new username will need to meet our username policy.
 * Replace the text "Your reason here" with your reason to be unblocked. In this reason, you must:
 * Convince us that you understand the reason for your block and that you will not repeat the edits for which you were blocked.
 * Describe in general terms the contributions that you intend to make if you are unblocked.

'--Please read to Unblock--'While I appreciate your monitoring of Wiki - I would like to direct you to the not for profit that I am affiliated with. www.crdnetwork.org - or Children's Rare Disease Network is a not for profit that provides resources for the millions of families affected by rare disease.

My efforts were to help direct families to additional resources being made availalbe to them based on our efforts - that is it. Simple. No alternate agenda. We are not spammers and we are not trying to advertise a for profit venture.

I would ask that you call the founder of the organization to explain why we have been removed or banned from continuing our efforts - my hope is that you now better understand what we are trying to accomplish and why our efforts are important and necessary for this community.

I am a volunteer for this organization and just trying to do good and make a difference. We have been approached by many families grateful for finding us through Wiki as a resource - not sure why you would want to put a stop to this.

My founder's contact info is Nicole Boice nicoleb@rareproject.org. I will let her know about this situation and let her know that you will be in contact.

Please confirm that you received this email. Thank you again.

Jennifer McCulloughJennifermccullough1 (talk) 20:11, 5 January 2010 (UTC) See also Appealing a block for more information. Tonywalton Talk 20:16, 4 January 2010 (UTC)
 * Accounts

--Hu12 (talk) 20:41, 4 January 2010 (UTC)

For the record
The message placed in the block template was also emailed to me. FTR, this was my emailed reply


 * > I am a volunteer for this organization and just trying to do good and make a difference. We have been approached by many families grateful for finding us through Wiki as a resource - not sure why you would want to put a stop to this


 * Because Wikipedia is specifically not for promotional use (what is being promoted is immaterial). I suggest you read the applicable Wikipedia policy at http://en.wikipedia.org/wiki/Wikipedia:SOAP#SOAPBOX - please note that no limitation is placed on what is being promoted, and that this is a Wikpedia policy, that is, one of the fixed rules by which Wikipedia operates.


 * You are welcome to request that your block be removed; to do this please follow the instructions at http://en.wikipedia.org/wiki/Wikipedia:Appealing_a_block


 * Naturally I, and the rest of the Wikipedia community, wish your organisation well, but ask that you do not attempt to use Wikipedia as a promotional tool. Further abuse of Wikipedia policy by adding what are effectively spam links (spam is spam, however worthy the cause) may lead to your website being blacklisted from Wikipedia (meaning that outgoing links from article pages to your site will not work).

Tonywalton Talk 22:15, 5 January 2010 (UTC)

And more, FTR
I'm placing the following in the public domain as well:

6 January 2010 03:28:14 GMT

Hello Tony, Jennifer has provided me copy of the email discussion back and forth between you both. I would like to clarify – there is a difference between self-promotion for personal benefit vs posting a resource/link that provides a specific benefit to a particular community. Your blocking a link to our not for profit is doing a disservice to millions of families looking for a home to find resources, effective treatments, cures and links to other families. I think you have the wrong impression about our organization. It would be like you taking down a Susan G. Komen link on a breast cancer community site on wiki – and I doubt that you would do that? Over 50% of the 7,000 rare diseases that exist DO NOT have a foundation of support. We are providing a home for these families and their children. I am not quite sure why you would choose to target an organization that is trying to help millions of families and their children. Curious. Nicole Boice Founder/President The Children's Rare Disease Network

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My reply:

On 6 Jan 2010, at 03:28, Nicole Boice wrote:

>Hello Tony, >Jennifer has provided me copy of the email discussion back and forth between you both. >I would like to clarify – there is a difference between self-promotion for personal benefit vs posting a resource/link that provides a specific benefit to a particular community.

That is where you're wrong. There is no difference, as far as Wikipedia policy is concerned.

Regards

Tony Walton

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And her reply to that

6 January 2010 14:47:00 GMT

Okay – then I would ask that you take down every foundation affiliated with a disease. All breast cancer, aids, and all other rare disease foundations –  and feel good about what you are doing to these families that are desperate. But apparently you know best. Obviously you are sick and dying with a disease or have a child with a deadly disease. Nicole Boice Founder/President The Children's Rare Disease Network

My reply:

On 6 Jan 2010, at 14:47, Nicole Boice wrote:

>Okay – then I would ask that you take down every foundation affiliated with a disease. All breast cancer, aids, and all other rare disease foundations –  and feel good about what you are doing to these families that are desperate. But apparently you know best. Obviously you are sick and dying with a disease or have a child with a deadly disease.

(I assume you mean "not" sick and dying). Deadly, no. I was, however, lucky enough to be born with CTEV, so I do have some insight into being brought up wondering why other kids didn't spend much of their time having painful surgery. The birth rate for CTEV is between 1 and 4.5/1000 (http://ukpmc.ac.uk/articlerender.cgi?artid=1050988); whether this fits your criteria for rarity I don't know.

Your rather hysterical attempt to embarrass me apart, however, you appear to misunderstand certain fundamentals of the way Wikipedia operates and its purpose. Wikipedia is an enecyclopædia. It is a tertiary source of information (that is, a compendium of information reported elsewhere). That is its purpose. It is explicitly not a source for promotion of anything. "Anything" here means exactly that. Not for promotion of commercial sites, of sites disseminating The Truth About Obama, of sites listing the best hiking trails in Colorado, and not for promotion of sites about rare disease foundations. I invite you to visit the links I provided to Ms McCullough for verification that what I am saying is not "me knowing best", it is "me quoting Wikipedia policy".

You, or anyone else, are more than welcome to produce an article on your foundation; as long as the subject meets the Wikipedia criteria for notability (see http://en.wikipedia.org/wiki/WP:N) and the article is neutral, non-promotional and does not contain copyright material. Someone affiliated with an organisation is not generally the best person to write the article, though, as they will have an obvious conflict of interest which will very possibly affect the neutrality of the article.

Regards

Tony Walton

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Tonywalton Talk 23:33, 6 January 2010 (UTC)