My Nonprofit Reviews

ITSAN does two things well: informing people of what their skin condition is and how to fix it, that is, "you have an addiction to your medication, stop using it, here's how"; and existing as a support group. Neither of which require the large sums of money they rudely insist they require, and that people naively donate to uncertain avail.

Until today the organization did not make transparent what they used the money for. This changed yesterday, after I posted a harsh criticism of this and other shortcomings on their forum, for which I was immediately IP banned from reading the site, let alone being able to post and respond to people. (I anticipated this. I'm not the first person to be banned for a petty reason.) Only today have more detailed accounts been made available on Guidestar of how money is being used, but, inconveniently enough, you must create an account to view it, and when you do the reports offered are insufficient and vague. Oddly, their transparency ratings were actually stellar for months before this point, but this can easily be explained by the emotional influence the organization has over its supporters - which I'll get to later - when they solicit them for positive ratings on 3rd party sites.

Otherwise, the organization has a history of offering insultingly poor reasons, if any, for needing money, such as:

~ "for forum maintenance" (which at the time was a FREE google group that was poorly maintained);
~ allusions to projects that don't exist, such as a "documentary" (no plan or production company was named, nor did it ever materialize), and "funding for research" (by whom and on what specifically?);
~ projects that are a poor use of money (such as trips for the board members to travel to eczema groups and hand out business cards, and poor quality teleconferences that very few would listen to, in an era when Skype is free);
~ "personally responding to your emails and phone calls" (yeah, that should be free if we don't also get an autograph, Ms. President);
~ bookkeeping and legal services (at the same time it says its funds are extremely low, such that they could probably do their bookkeeping themselves if any need be - it be not, and neither be legal services);
~ etc.

This list was up in one form or another for over a year, but no record has ever been offered of how funds have been used to these ends. Today, these reasons are no longer available for viewing on the donate page, and there was no attempt at offering an explanation for their abandonment.

Instead, when donations are solicited, they are routinely promoted as expected, wholly-deserved demonstrations of gratitude, with express astonishment that they aren't already showered in alms. Those who do not donate are implicated or explicitly described as ungrateful and parasitic. This guilt-tripping has been the standard mode of solicitation for several years.

What ITSAN did successfully for me is exist as an *informative website*, although it was only 10% of that which convinced me that I had the condition it was promoting. The other 90% was the unaffiliated blogs of similar people, and, more importantly, my own experience of years of skin problems, without which I would have immediately written off ITSAN as a bogus website, given its rather dubious presentation of the information that convinced me. I am not alone in this sentiment. Perhaps it was four years ago, but today, ITSAN is no longer the best or only source for information on topical steroid withdrawal.

ITSAN was co-founded by the current president and Dr. X (lol can't post proper names here) the far more important of the two being the latter, a veritable expert on steroid addiction in and out, having conducted research and successfully treated thousands of patients, and it was from him that came the informative content that gave and continues to give the website its original power. He has since cut his affiliation with the group, and wisely so, but it continues to benefit from his expertise.

As an *organization*, ITSAN has done very little extra, the most significant, making a forum available on which other patients can share their experience. Ninety percent of the value of a discussion forum, it cannot be argued, comes from the participants in the discussion, NOT from the people administrating it. In other words, the the useful aspects of the forum are not ITSAN original, and any single individual with the capital to start a simple vBulletin forum could do as well as them. As forum administrators ITSAN, an entire team of people, has done the minimum required while relying on donations from the participants. The forum itself is very poorly managed, but it is the only one that exists, and thus, it is where the people go.

ITSAN is primarily an emotionally fueled organization. Not information, not reason, not progress, not profit. Emotion is the major currency, that is clear from the way information is presented on the website, the rhetoric the administration uses to communicate its "need" for funds, the way it chooses to censor valuable information on the forum, and its general manner. Its supporters defend criticisms to the organization the way one defends one's mother. Their 501(c)(3) tax exemption is more honestly described as religious.

Emotion is by and large what is exchanged between ITSAN and those who support it as a brand and a name. Understandably, TSW is a very emotional process, and can cripple already-weak faculties of judgment. These people are very strongly invested in the forum as a source of emotional support, and seem to be persuaded by ITSAN that a donation functions as an expression of gratitude, rather than an investment in the promotion of an agenda. This agenda ought to be very simple: to promote awareness of topical steroid addiction, and to support those already aware.

I'm afraid people are still misguided in thinking they have to pay an "official" to do these things for them, instead of doing it themselves. Coincidentally, ITSAN has long promoted, and invested much of its efforts in, its superficial hallmarks of legitimacy, in overwrought acronyms, titles like President and CEO, "professionally published" children's books, crystal trophies, business cards, "professional videos", and the like, none of which can hold up its trappings in substance. Do not mistake this for meaning that they are a malicious, deliberately deceptive enterprise. I feel they absolutely believe in said trappings, and would buy into them from any other enterprise that touted the same. This does not mean anyone else should.

All this is to say that those who donate to ITSAN are under the mistaken impression that ITSAN is doing something that they cannot, as individuals, do themselves. You can start your own forum, you can promote others' blogs, you can share information related to TSA, you can host Skype teleconferences, you can contact Drs. Rapaport and Fukaya, you can start a facebook group, you can start a support group, you can make an informative video, you can publish a book, contact local news, write your own news article, and come up with your own official titles and banners and acronyms to decorate, and it all takes little effort and, except for the forum, costs next to nothing. Welcome to 2014.

This is not to say they don't have the best intentions, but money should not be blindly flung at an organization that is well-intentioned but incompetent. An organization, in the end, is just a group of people with a name. Yes, they're trying hard, but they're not savvy or smart enough, volunteer or not, for that work to pay off efficiently, let alone use money effectively.

I invite anyone unfamiliar with ITSAN to take a look at the forum, the website, the former google group, and affiliated resources, to substantiate my descriptions above. (Before they're all made unavailable for viewing, of course.)

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Response to comment: The only "falsehood" in my review is that the trophy is actually acrylic. Pardon me. Otherwise, my review stands exactly as it is, and this is the last update I will make to it. Proof for my description of the former donation page can be viewed with the Wayback Machine. It was never my intention to make suggestions for improvement to ITSAN. Whether or not you welcome them anyway - that is, whether you care to improve for your own sake - is your concern, not mine. I made this explicit in the post I was banned for, a post that was well deserved for your shameless solicitation tactics and your failure to show anything for your donations other than what can be achieved for free. No one needs you. You need them. Your ability to make them believe otherwise is your only talent. Oh, and thank god my email is unrecognizable.

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