Today is a sad day indeed - but before I explain why, I wish for everyone to know I am not bashing anyone here on my blog. I am simply stating my thoughts and feelings about a situation that has occurred on the ITSAN forums over the last few days. I am NOT encouraging anyone to remove themselves from ITSAN by any means. Many people will wonder why I am no longer a member and this post is an explanation from my point of view.
As of today I am no longer a member of the ITSAN forums - and I am deeply saddened by this. It was MY decision to leave however I did so after I was given a final warning for undermining the ITSAN administrators. I am perplexed why they thought I was undermining anyone when I was actually trying to help (this is my opinion). A member had made a plea for donations explaining that donations were embarrassing and pitifully low. I made a few comments explaining that some people may have financial hardships due to missing work from TSW. I explained my own situation in which I have missed a total of 6 years of work due to my worsening eczema, depleted adrenals, and liver damage (from topical steroids). I was trying to explain that some people may find the pleas insensitive given how much pain many people are in. This statement was made:
"We get a constant, steady
stream of comments about how much a blessing this site is and how important
ITSAN's work is, yet most of these commenters don't seem to want to pay
anything for that benefit"
I find this hard to read given that it is not that people do not want to give - it is that they truly cannot! I am one of those who cannot give at this time yet I had wanted to. So I take offense to statements like this and others where people say people buy all sorts of remedies in hopes it will help them heal yet can't find $5 to give to ITSAN. Do you ever think that maybe people are borrowing that money in hopes of finding ANYTHING to give them relief from such torment? I also take offense to people calling me a taker...simply not true. I have given lots of time supporting others emotionally and answering countless emails. I have gone on a mission to directly help those affected by TSW to help ease their pain. So I am not only hurt, but truly mystified by this situation.
In any organization, growth can only happen if the leaders of the organization continuously assess the path they are on - that includes acknowledging mistakes and errors and correcting them. I find it difficult to swallow that an organization that wants to grow will shut out any and all people who question them or give advice that may actually help the organization. This is detrimental in my opinion and could be a big reason you will see such pitiful donations. You may also consider that allowing members who did give money to call other people names is just not good for business. Having a member say that most forum members are leaches and scum is truly disheartening as most members are just struggling to survive - to be called names is offensive and hurtful and not necessary.
But instead of acknowledging any wrong on the admin's side or the one's donating - the posts are deleted and everyone pretends like all is good. This is again detrimental in my opinion. Kelly Palace had remarked on the plea for donations in a very kind and gentle way - a way that I found productive and would have probably brought in much more donations if she had created the post herself. She has done so much for those suffering with TSW and I am deeply saddened to leave her and others. But if they continue to allow administrators to make others feel guilty for not donating, and they allow admins to essentially bully those actually trying to help, then I can no longer support such an organization.
I will instead continue to spread the word about TSW in the medical community and via Facebook and this blog. I will continue to search for answers regarding the possible correlation between the MTHFR gene mutation and TSW. I will continue to support my fellow warriors on their individual blogs.
I have never come across a non-profit organization that tries to make people feel guilty for not giving them money. My husband and I supported a non-profit organization plus a few ministries prior to me going through TSW. We donated well over $200 per month just to the one organization. My lost income has found us living paycheck to paycheck with my husband required to work overtime to make ends meet. Our kids have dropped all activities and we no longer eat out. We had planned to move to Kentucky to start a small farm - all of that is no longer an option until I am back to work on a regular basis. I am not complaining - simply stating a reality - one in which many of those suffering find themselves. It is what it is and we trudge through it. Once I was in the clear and we were back on our feet, I had planned to donate that $200 to ITSAN every month because of how grateful I am for their work. Yet I am left with a sour taste in my mouth for the way the organization is allowed to be run.
If anyone reading this starts thinking maybe they too should leave ITSAN - I would say don't - you have a lot of support from the members there - if you are one giving a lot of emotional support - then others need you there. I did not make this decision hastily. I had left the forums a few times in the past for similar reasons. This was basically the straw that broke the camel's back for me. I had seen ITSAN make a lot of positive changes and had hoped something like this would not happen. Those that know me well and work with me know that I am a reasonable, rational person. I dislike arguments and do my utmost to be diplomatic and peaceful. I am disturbed by all that has taken place but I urge those still supporting ITSAN to please continue to do so - they have a message that needs to get out there. I just hope that changes can be made at some point that will help them grow bigger and better.
Hello I am a member of ITSAN and I thought the post was very tasteless as well. It seems like whoever posted that comment was trying to ridicule the members into donating. I don't think that that is a right way to urge the members to donate.
ReplyDeleteThank you for sharing your opinion! Hoping you are having a decent day! Read your info - love the Labyrinth movie as well!! :)
DeleteAs board member/hardworking volunteer of ITSAN for last 2 years&mother of a child who suffered TSW, I am saddened and offended by this post. I am saddened at how donation requests are blown way out of proportion&get turned into something negative for ITSAN by a few members (majority don't have a problem with it) who clearly have way more free time than I do to turn a simple request that is normal for non-profits into such a big deal and dramatic event. Fascinating is that an organization like NEA can send the same kind of donation requests (monthly) and not a peep from people--not one post saying why on Earth are they asking for donations and 'guilting' people into donating. Maybe their donation requests come from a staff member who is paid to do that sort of job -- ITSAN doesn't have money for any paid staff.
ReplyDeleteThe NEA letter states, 'Where would you be without NEA' and brought in hundreds of donations for NEA, an organization that hardly even acknowledges TSA, let alone supports it. Yet, when ITSAN members, not just board members, do a request for donations, they get reprimanded by a few outspoken forum members who for whatever reason take it as a personal attack on them -- grumbling about how the request made them feel guilty. Saying admin. is bullying others who are trying to help others is completely laughable. If anything, the few members who seem to want to try and make life miserable and uncomfortable for everyone else on the forum are the ones who are 'bullying' and wasting everyone's time and energy, including admin!
When it was my idea to use the same donation letter template NEA uses on a regular basis to help bring in more donations that are needed to further ITSAN's mission, it bent a few members. I don't understand it. Kelly and her husband are still dipping into their own pocket to keep ITSAN afloat- certainly not for themselves at this point, but to help all those who are still suffering. It costs money to run any organization and the same admin. that everyone, including yourself, is so hard on are basically the same individuals who are so generous and giving of their time and money -- basically what keeps ITSAN going. When I read posts about how someone must be making money off of ITSAN, I just laugh -- maybe costing money is what they mean to say.
Your post doesn't sit well with me on so many levels:1) because I am one of those board members/admin that people like to refer to when things don't sit well with them 2) I work another job on top of volunteering any spare time I have to this organization for those are still suffering (I certainly don't do it for myself because my daughter is healed. That is time that I could be spending doing something for myself or even my own family 3) I get the financial hardship - believe me, my husband and I walked away from our house because of the TSA nightmare. But that didn't stop me from helping raise money for the organization even if I couldn't give myself, which I always found a way to even if it was $10.00. Kline's mom has yard sales to help raise money. There are other ways of supporting ITSAN if someone can't financially -- writing a blog post like this is not one of them.
If someone isn't able to donate money, I get that (all the ITSAN admin do), but then at the very least, don't sit and debate it with others on ITSAN's forum and blog about it. That just causes more work for the admin and confuses people who are just joining ITSAN's forum and trying to get the help they deserve. Maybe that time can be better spent helping others on the forum or volunteering for ITSAN.
Kristina - I am truly sorry you took offense to this. I know how hard many of you have worked for ITSAN and to spread the word about TSW. I was only trying to help a few of the ITSAN's members and admin understand that the way some pleas for donations are written can be offensive to some - and that just by re-wording the pleas, they could truly reach more people and gain more donations. This was never meant to be dramatic - I do not like nor encourage drama in my life. I was trying to be helpful in as much of a diplomatic way as possible - I truly apologize if this was misconstrued. I do not have time for drama nor do I have time to waste in my life. I was very clear and precise in my post. I receive numerous emails - some of which are through the ITSAN forums - and I wanted people to understand why I am no longer there. I was clear that people need to continue to support ITSAN. I wish you well.
DeleteWhen my daughter was suffering immensely through a painful withdrawal I didn't have time to get into it with people about what ITSAN administrators were doing and not doing -- whether or not they were asking for donations, I was just so grateful to have a place that gave me the information needed to heal my daughter and the support I desperately needed. I certainly didn't jump in on threads that were speaking negatively of the one organization that helped save my daughter.
ReplyDeleteYou are not the only one disturbed by all that has taken place and you are not the only one with a sour taste in your mouth, believe me -- only my sour taste is because of a much different reason than yours. I wish you the best in your healing process and hopefully the 'sour' taste will eventually wash away. It is too bad that you walk away from ITSAN feeling that way. ITSAN's admin have worked their butts off -- literally night and day -- sacrificing way more than we probably should be at times. That is maybe what people should focus their attention on instead of nitpicking what the admin. does or doesn't do, what the website entails or doesn't entail.
We are all just unpaid volunteers who have lives outside of ITSAN -- I would much rather spend what little extra time I have with my family instead of addressing threads that are debating why or why not people would donate to ITSAN or even a blog post about it! To take all this time to write a blog post about your decision to walk away from an organization that is trying its best with the little help it gets (financially and in terms of actual hours people are willing or should I say not willing to volunteer) and yet is still making a difference in thousands of peoples lives -- and then tell people that they should stay with ITSAN makes absolute no sense to me. Why even write a public post like this -- to confuse people? or/and to make yourself feel better?
After the nonsense thread started by someone about why they wouldn't donate to ITSAN, I had to respond to personal emails from new parents baffled and confused by the thread -- more of my time and these parents time 'wasted' because of one person having way too much time on their hands. The only thing that thread did besides cause you to walk away from ITSAN is generate a lot of donations from many grateful and appreciative people. And the only people those threads hurt are the other members- why on Earth would someone want to do that?
Those who seem to have an opinion of how ITSAN should be run and what posts should be deleted and not deleted, who should be banned and not banned, ironically are never the same people who have ever stepped up to offer help and volunteer their time or donate a penny to the organization -- they just spend their extra time questioning admin. and everything we are supposedly doing wrong. Amazing!
Good luck with everything. I am happy to see that you will still be supporting your fellow sufferers in your own way. All this crap set aside, many people read your blog for valuable information. I have had a few parents actually tell me how helpful your blog is - so to bog them down and clutter their minds with this kind of post is what saddens me.
-Kristina (mother of TSW sufferer who has since healed and ITSAN volunteer who helps others who are still on that path to healing)
Kristina, Tracy and I don't agree on many things and one of them is I do not encourage anyone to go to the Itsan forum, she does. Since you are a board member you were part of the decision to ban me from the forum last year early on in my own tsw. I had said very little publicly to deserve such a cold and heartless action. You said:
Delete"Those who seem to have an opinion of how ITSAN should be run and what posts should be deleted and not deleted, who should be banned and not banned, ironically are never the same people who have ever stepped up to offer help and volunteer their time or donate a penny to the organization -- they just spend their extra time questioning admin. and everything we are supposedly doing wrong. Amazing!"
FALSE! I donated $150.00 soon after joining the group. I had planned on donating monthly. I also offered to set Itsan up with eBay's charity program which would have given Itsan exposure to millions of people worldwide. I also volunteered several times for anything I could do for Itsan. Maybe you guys spend too much time censoring what members say and writing donation letters to take advantage of the resources that are right in front of you. I spent hundreds of hours on the forum showing people how to effectively do MW at a time when very few if any knew the benefits of it in the US, or how to do it. My threads were the top viewed threads on Itsan while I was there and for months after I left. I think I gave quite a bit to you guys and look how you treated me. You still don't appreciate what I gave you. And it's not just me. You guys have banned a lot of people. Others just leave in disgust like Tracy just did. Your staff and vets insult people constantly and do nothing but spout off how you all know everything and anyone under 2 months, or one year in tsw doesn't. You're a very condescending small group of people who think you know what's best for everyone when you don't.
All I asked in return for what I did for Itsan was for Itsan to stop telling people that nothing can speed up tsw other than the passage of time since that is pure unadulterated BS, and sets beliefs in suffering peoples minds that all they can do is wait for years like you poor souls did. It makes people feel helpless, hopeless, and a feeling of having no power over their situation. But that's exactly what you guys want isn't it? For everyone to rely on you and only you. That would be fine if you only knew what you were doing.
I explained about the placebo effect so it's not like you couldn't grasp the concept of what I asked. I asked privately for the board to adjust policies on moisturizing as well. And what did I get for my money, time, and teaching you much more effective ways to mange tsw? Banned!
And who did you ban just a couple days ago? Someone else who expressed their disgust in the way you guys ask for money. As she so elegantly put it, "what you do doesn't require that much money". You pattern your donation requests after the NEA just like you do with moisturizing and your admiration of the very doctors who put us in this situation. You guys don't seem to understand much about healing, marketing, running a support forum, or anything else that would make me want to send people your way. I spend much of my time undoing the harm your beloved site causes so many people once they figure it out and go looking for "good" information elsewhere.
Itsan offers nothing in my view other than a central hub where we can all connect. That is extremely important and valuable but that's where the value ends. The way you guys run the forum is obnoxious and sickening. People want information. You attack one of your best advocates just like you have attacked everyone else with a brain who dares offer some good advice. Oh, that's right. Members aren't allowed to offer suggestions. Why don't you people step aside and allow people who know what they are doing run that site?
Kristina,
DeleteInstead of acknowledging Tracy's point on how inappropriate it was for some ITSAN members to call other people names when they are not donating, you instead come out to trash Tracy's post as one that is meaningless for ITSAN.
Of course, as a board member, you have a vested interest to protect your institution. And of course (considering that you are all volunteers), you could exercise a bit of proper PR skills in managing this situation.
First, not donating does not mean we are only taking and not contributing. Many blogs are more informative and more useful than what ITSAN can provide. Shouldn't ITSAN donate to those blogs too?
Second, blogs are personal private space. While you can censor information in your own ITSAN board, you can't do that to other's personal private blogs.
Third, as board member, you should moderate your ITSAN's call for donation to an appropriate level, one that is respectful. Copying NEA template just shows laziness and lack of professionalism. (But wait, You guys are just voluenteers, I shouldn't expect much from you). NEA is not ITSAN. The scope of members in these boards are different too.
Also, I'd like to seriously ask: What value does ITSAN offer such that people are OBLIGED to donate for the awesome value? Convince not me, but the members of ITSAN. If you can't answer this basic question, don't even bother asking about donating.
Another thing Kristina, remember when I wrote a long email to the board minutes before being banned and said don't bite the hand that feeds you? How I explained in excruciating detail what you were doing wrong and how wrong you were in setting the belief in peoples minds that the only healer is the passage of time? And, how I expressed my dismay at your failure to compromise on anything? Remember Kristina? How I showed that moisturizing only prolonged tsw and made people much more more miserable and uncomfortable? Have you figured out yet that I was correct, that the Japanese were correct? You still need controlled double blind studies to understand this simple truth?
DeleteYou have no business trying to control what others say in their bogs so stick to your private forum where you do have control over whats said. To attack someone outside of your forum site is not only out of line but just plain cruel. especially when you attack someone who has given so much. Why don't you come over to my blog and tell me how you feel. I'd love to give you a real piece of my mind. It's no wonder Itsan has lost so much credibility with the heavy handed way you guys operate. And the condescending way in which you guys treat people on your site.
But even more importantly, you guys have failed to recognize far better methods to mange tsw symptoms and continue to lead people down the wrong path in my opinion. This has been the most outrageous thing I've ever seen a supposed support group do. Just because a few people have done tsw a certain way does not mean there aren't better ways. And your failure to recognize that has cost your beloved site a lot of credibility in the eyes of people when they discover why they aren't healing like they should. And why their healing takes so long. You and the rest of your friends should have enough intelligence to embrace new information but you have chosen to ignore it all. So, stick to your private group and leave people alone. Everybody is entitled to their own opinions whether you agree with them or not.
This comment has been removed by the author.
DeleteThank you Dan and Leslie for offering your opinions. I think you both made some very valid points. Dan was right when he said we don't agree on many things - sometimes I think he is a bit harsh with his words - but I would never edit nor delete his or anyone else's comments (except for the typical spam). I believe wholeheartedly in free speech. I know ITSAN's stance on free speech is that it is not allowed because they are not Congress and they are a private group that can moderate the comments and posts. That is their stance and I accepted that when I was a member. However I never agreed with that stance, hence why I allow free speech here on my blog. I don't have to agree with all the comments but I believe people should have a place they can talk freely about how they feel. The thing that was missed in all of this was that someone approached me privately about the donor requests made by members of ITSAN and said they felt horrible that they couldn't donate but they felt they couldn't say anything for fear of censorship. Many new people on ITSAN have yet to be the target of censorship - but if or when you do, it is a horrible feeling, especially if you believe you have followed all the rules. I have been censored more than once and felt horrible given I watched every word I wrote to make sure it fit neatly in their guidelines. My intent on responding to the posts about donations was to make ITSAN see that some people were hurt and offended by the wording in their requests - it wasn't just me. I was actually trying to speak on behalf of others and hopefully make ITSAN see that being somewhat insensitive could actually hurt them.
DeleteJust sad... :(
ReplyDeleteHi Jenjoy, I'm andher, remember your response to my controversial thread. (I was somehow able to read it briefly in spite of my ban.) I've looked into creating an alternative forum, one more smoothly run and free of censorship, and found that it's possibly within my budget to create. Before I begin work on it, I'd like to know, would you be interested in contributing to the discussion there if it happened? I'd really appreciate your presence!
ReplyDeleteThis message extends to Tracey as well. I found your thread and method exceptionally constructive and I would like to provide a space for that kind of discussion to thrive, for everyone's benefit.
Of course, people will not need to pick one forum over the other. I'm only creating options.
I look forward to your feedback.
andher
*Tracy
Deleteblegh, I'm sorry!
There are multiple forums on just about every subject under the sun. Hundreds just on dieting alone. With something as important as tsa/tsw there should be more than just one forum. Especially one that is run the way Itsan is. Itsan should embrace any new forum for tsw that should want to open up. It can only help, not hurt. But, it appears this is a real fear of theirs. I'm not sure why that is.
DeleteI personally think promoting a children's book for tsa/tsw is a waste of money, time, and effort for one thing. A book describing what tsa/tsw is and how to mange the symptoms written for adults makes much more sense to me.
Rubbing elbows with Dermatologists and the medical establishment will get us nowhere and is a complete waste of resources. Like you eluded to in the post you were banned for, Itsan doesn't need much money to accomplish it's goals of spreading the word if they were to make better use of their resources. Not to blow my own horn, but the fact is I was a great resource for them and look what they did with that one. Look what they have done with all their best resources. Multiple forums on tsa/tsw would be highly beneficial to all and would make far more impact.
Andher - Dan and I have discussed setting up another website and/or forum. This was well over a month ago I believe - at that time I was in the process of possibly moving. Well moving is out the window for at least another year or two so my time has been freed up as I am still unable to work full time. I think it would be beneficial to have another forum/website - one where ideas can be shared openly and criticism would be allowed so that we can continuously re-evaluate our goals and future. Anyone interested should email me and I will discuss this further with those already interested to find a time we can all chat online about our ideas.
Deletelets discuss more on setting up another portal.
DeleteI've the technical know-how. We don't need ITSAN as the "official" mouthpiece that is led by backward leaders.
Tracy, Dan and I have exchanged emails a good bit over the past several days. I'll give you my address and I'll fwd you what I've already thought up. Leslie, your knowledge would be appreciated. Please feel free to contact me as well.
DeleteWhat do yall think of phpbb? I was rather set on it as a debut, since using it would make setting up a forum altogether very cheap. vBulletin is expensive but if we ever need it in the future and can afford it, it offers an easy way of transferring data from an established phpbb forum.
Andrea
oholof at gmail
I have used the ITSAN website and do think it is a valuable resource, but I haven't been on the forums much. To be honest forums are rife with disagreements, discourse etc and I don't think it is the place to discuss financial issues ITSAN face. I haven't seen the posts, but I can imagine what happened. It's best to leave the donations/running of ITSAN on it's website or blog post. It's more professional. People want to be reassured that this is a professional company whether non-profit or not, issues like this is only going to damage the reputation. A lot of non-profit forums put ads on their forums and advertise donation requests on their forums as ads (not posts) as part of using the site. Also there are a LOT of people with time on their hands due to TSW and volunteer help must be as valuable as money surely. I know I would gladly volunteer, I've left posts about petitions and leading a twitter campaign, but I never really received any replies. TSW knowledge needs to be spread far and wide and these blogs do that. These bloggers are volunteering their time to spread the word and that helps the cause. The cause is what's important. Banding together and spreading the word is what is important - until the medical community responds we are mostly on our own and ITSAN suffers - with everyone spreading the word, actively doing, the medical community will sooner or later have to respond and when that happens people will have more support. More money to give ITSAN and ITSAN will be seen as a valuable resource not just by sufferers but the medical community too.
ReplyDeleteI agree that the cause is what is important. I think growth is occurring regarding TSW even outside of ITSAN - any growth should be celebrated as that means more people waking up to the dangers of long term use of steroids - and that is the ultimate goal - to alleviate suffering.
DeleteWell, I am not surprised by the state of affairs, given how their "Leadership" handles their forum affairs - by actively censoring anything information or comments that do not reflect well on them.
ReplyDeleteWell here's my advice to ITSAN:
If you want people to donate, make sure you make full good use of the funds, and declare them in greatest transparency of their usage.
So, can ITSAN disclose, how much funds have they received, and how much they have used for whatever unknown programmes they had? Show me good usage of funds, and you will have more willing donators.
I'd be better off donating to the NEA rather than ITSAN, when such information on funds usage is not disclosed.
Tracy ~ I haven't been on ITSAN for about two weeks. I used to be on there several times a day, however, I have been feeling so much better that I decided to take a break from it. I went on there today to post a thank you to you. Then I went to my email and found your post saying that you are no longer a member. I have no idea what has happened, like I said, I have not been on ITSAN. I feel horrible about this, you are such an asset to the TSA/TSW community. I am going to attach what I posted on the site.
ReplyDelete"I just wanted to personally thank Tracy for all her research on MTHFR, and for all that she has shared. Her research and advice regarding supplements have played a huge part in my healing process.
I had done a lot of research on the skin, healing, and the immune system. I tried to gather as much information as possible to try and help with the healing process. I started taking some supplements, such as spirulina, B vitamins in the form of active yeast flakes, kelp, and rice bran. Prior to TSW I drank a lot of fresh juice (carrots and greens), however, during the first few months, I wasn't able to juice, it was too hard on my body. But, around the fifth month, I was able to start up again. Although these things helped with healing, it was slow and gradual. At times, it felt like one step forward and two steps back. However, once I started taking the activated B's and the L-5-MTHF, I saw a dramatic change in my skin. It wasn't as dry, the itch subsided a little, and I virtually stopped flaring. After two weeks of taking these I also added the others that she suggested; TMG, MSM powder, and Glutithione. I feel amazing. My skin is so much better, the itching which had been overwhelming, has become quite tolerable, and the insomnia is gone. I feel almost normal. My hands and feet still need some healing, but, I am so hopeful. They are healing, and great progress is being made. Now it is one step forward, no steps back!
So, THANK YOU, Tracy! I am grateful that you took the time to study, share, and encourage, it has definitely made a difference in my life! :thumb up:"
I truly feel bad that you are no longer a part of ITSAN. I am grateful that you are still blogging and sharing with others - you have been a huge blessing to me. Thanks again, Tracy!
God bless,
Ronda
Thank you Ronda for your very kind reply - I am so very HAPPY to hear you are healing much faster!! I too feel very bad about all that took place - but again it wasn't a knee jerk reaction as I have had issues in the past which I had hoped would not re-surface. I am still on my mission and healing stories like yours makes me continue forward in hopes of helping so many more! Many blessings to you! I pray your healing continues at this rate!!
DeleteI too had to take a break from Itsan. I don't post on there a whole lot but was on there daily for hours for a long time. I don't like the way things have been on there lately. What you said put how I feel perfectly. Thank youfor all your research Tracy. I read your blog all the time :) hope you continue to do well!! http://atopiclady.wordpress.com
ReplyDeleteThank you for your kind words! I know what it was like to be on the forum for hours - during the darkest days when all seemed hopeless. I kept searching for answers but unfortunately ITSAN's mantra that only time heals left me feeling helpless - and I don't think that was wise given the hopeless feeling it creates in people who are really suffering. There were discussions at one point by Dr. Rappaport who said a few people had become suicidal - I think it was more than a few people but no one wanted to truly acknowledge this. I personally never became suicidal during TSW yet I can totally see how and why people can. So it was my mission to find an easier way through this and give people hope, not an unknown sentencing of misery. And since my mission is in direct conflict with their belief that only time heals, well it has made more sense to me to branch out on my own.
DeleteBTW, I added your blog to my blog list - anyone not seeing their blog on my list, please message me or leave me a comment with your blog address so I can add you.
Tracy, I happened to see the thread on the forum as it was happening and I was taken aback by the administrators response to yours. I think it's fine for an organization to ask for donations but if they aren't given, who are they to reprimand those who cant? I think whoever you were speaking with was completely out of line. It should be obvious that not everyone can donate because of their own circumstances but YOU certainly werent reprimanding THEM...it was almost like they were throwing a temper tantrum. With all that said, I actually donated $200 just a week ago bc I do believe that awareness needs to be spread and if they have the means to get into these conferences and such, then I want to support that. But given the way they treat people who cannot donate makes me less likely to want to do so in the future. In my opinion, there should be moderators for the moderators! lol...anyway, just my 2 cents! Your blog has been one Ive followed from the beginning of my journey and have found it immensely helpful so thank you for that!
ReplyDeleteTracy,
ReplyDeleteYou are possibly the singular reason I joined Itsan to begin with...I have to say, I haven't posted much either on the board since December, when I found Dan D. and followed his moisturizer withdrawal process to the letter. In my case, I had NO issues after a couple of weeks (not pleasant weeks, but definitely led to bigger and better things) with my face and hands which remain clear and smooth to this day; no small feat following a brutally cold and dry winter. I would not have found Dan D. if it hadn't been for you, and I thank Dan D. and you for me healing progress. I still have a bit of a way to go, but the insane itch trance(s) of the years previous are totally gone. I have manageable eczema that sometimes flares, but only for 24 - 72 hrs. I'm not even sure what you wrote on Itsan, but you will be missed and I know you to be a completely fair-minded woman with much integrity and grit when the going gets tough. And it got tough Tracy, for you and me, last year. I don't know what I would have done without you. The one thing Itsan has done well is attract really lovely people to its' forum who are brave to share their experience(s). It is shocking to me that Kristina was brazen enough to post such inappropriate, and rather rude "response" posts on your personal blog, but I guess that is consistent with how Itsan now operates. I hope you know how many of us celebrate with you at the amazing progress you have made and the contributions that have helped so many.
Your friend,
-Ruth
Ruth - your response made me cry! It was you and a few others that actually kept me going on my hunt for a better way through TSW. You were suffering terribly as was I and I remember going weeks and not hearing from you - and worrying terribly that you were in that deep dark place. Now I know when weeks or months go by it is because you are busy living life again the way you should be! I congratulate Dan for his eagerness to share MW so fervently - I don't think the supplements alone would have been enough to show real progress. The combination of the both gave me my life back almost completely. Not much can be done with my hands - they are fine as long I keep them dry - any washing causes them to break out. But I am happy to just not be in pain - as I know you are celebrating that as well! I am so very happy that you are doing so well! We have so much to be thankful for - I for one am thankful for friends like you who kept me going through the dark days and times like this when the going gets a little rough. :) Many hugs and prayers your way my friend! Please stay in touch! I hope this summer is your best one ever!
DeletePART 1
DeleteI am the one who wrote the post asking for donations on ITSAN’s website.
I was home after a meeting with the other board members and thinking about all we want to do to raise awareness of TSA/TSW. One agenda item was going to the NEA conference in July. After initial conversation, if we wanted ITSAN to get a booth and have a couple of us attend, we would have to pay our way and pay the booth fee too ($1500 for that one line item alone). Two board members already attended an American Academy of Dermatology conference in Denver last month, at their own expense. The president of ITSAN, Kelly Palace, presented and ITSAN was voted as a member of the Coalition of Skin Diseases, much to our surprise and delight https://www.youtube.com/watch?v=K_9oGQUGB3U.
Anyway after seeing how we can make a difference by getting access to such meetings and conferences I was frustrated that we had been getting a handful of donations a month and realized primarily it’s because we have a little donate button on the website and that’s about it. We have had no real fund raisers, unlike just about every other charity out there. So I made a plea for donations as a forum post. It really did come from the heart. I lost a good year and a half of my life looking like a burn patient and owe my recovery to these guys who started it all, and I owed it to ITSAN to remind folks about what we look to change with regard to these destructive chemicals our MDs prescribe to us with no concept of the ramifications. I assumed like I do with every other fund drive and email I get from charities asking for money, if people chose not to donate they’d just ignore it.
But contrary to that, one person whom we didn’t even know and who had never contacted us about any of her multitude of complaints went out of her way to trash ITSAN because we had the audacity to ask for money. And for the person who told Kristina she was trashing Tracy S. and her blog by posting her response, you must not have read the post by Andrea, who went on for longer than this post probably will be about every aspect of why ITSAN so sucks, from our logo font to our forum software to our “dated” ways of doing most everything. Wow. She raised some good points which I acknowledged. It’s just that the delivery was devoid of anything resembling civil discourse. And fortunately it had the opposite effect as people rallied behind ITSAN and made numerous donations.
I know there is a refrain by some who ask, “It’s only a website. How much could THAT cost to run? I want to see their books.” First, ITSAN is not simply looking to keep a forum online for people to use. We have to make inroads into the medical establishment if we are ever going to change anything. This is precisely what we are looking to achieve, hence why Kelly went to Denver. Second, the organization is a 501 c3 non-profit in the US. We publish all our tax documents, balance sheets, reports, etc. for anyone to see http://www.guidestar.org/organizations/45-4556484/international-topical-steroid-addiction-network.aspx. This link as at the bottom of ITSAN’s home page. We have no secrets. The notion from a few people that we somehow are misappropriating funds is ludicrous. We the board give the majority of the money to run the organization. That’s a fact. I mean why would we steal from ourselves?
I want to address one more thing – censorship/free speech. We hear accusations that we censor and ban people with abandon. In actuality the admins and moderators have banned a total of four (4) people from the forum since its inception, and interestingly three of them are posting here on this thread. I’ll explain the history behind this censorship thing.
I went to the guidestar page, signed up for an account and this is all I see.
DeleteRevenue Contributions $12,912
Program Services $0
Membership Dues $0
Special Events $0
Other $0
Total Revenue $0
Program Services $6,204
Administrative Costs $570
Fundraising Costs $0
Payments to Affiliates $0
Total Expenses $6,774
Tracy, you call this full disclosure? Tell me more about the program services, in detailed breakdown. Same for administrative costs.
You have nothing to hide, so show us how the funds are used for ITSAN goals. Again, convince your members, not me. What inroads have you actually made, what results have ITSAN actually achieved? Are there improved medical policies? Are there improved government intervention? Is there increased awareness (perhaps, but is that all ITSAN does? does the funds justify the outcomes? Show me in your programe services that costs $6204). Display the details in public, at your own website, in your forums, so that your members can know exactly without the need to register and sign up at a guidestar account. (And even if they do that, they won't get any more valuable information than what I have presented).
If you want to run the organisation well, run it with integrity and manage it like adults. First start by respecting people's view, even if they run contrary to your cause.
PART 2
ReplyDeleteFor a period of time the moderators and admins would not allow discussions of “experimental treatments.” The first concern was we would be allowing information that could potentially harm people due to their desperate situations.
Maybe 2.5 years ago someone posted a “Korean steroid withdrawal detox treatment” to get over TSW quickly. He had a chart of the protocol – 30 minutes in the sauna, 30 minutes in the Jacuzzi, 10 minutes, rest and repeat for 4 hours or something. Presumed testimonials were on the web but they were in Korean. I and a few others were desperate to try anything and I nearly passed out from all the heat. I did it for weeks, with ensuing bad flares as a result. Fortunately I am in excellent health, but others could have had serious complications doing something like this. Someone else had posted a vitamin C IV treatment. At $120 a pop, I did that for about 6 weeks. Others did too. No change in my condition but I spent a few thousand dollars as a result.
We got to the point where we felt we were doing members a disservice by letting them post such things, so we instituted a policy to not allow experimental treatment discussions and focus on ways of helping make oneself more comfortable, because in all honesty, we thought we had tried most everything on ourselves and nothing worked for us. We got push back consistently and had to give people warnings all the time. Finally we realized it just wasn’t working. So we created an experimental treatment forum. But incredibly, a few vocal people out there keep going on about how we won’t let people talk about other forms of treatment or cure possibilities, or that we assert the absolute by saying NOTHING BUT TIME HEALS THIS CONDITION, hence we still “censor” and are pig-headed, stubborn and out-of-touch. I just find that disingenuous on so many levels. I was the one who moved to change the posting rules. I added the experimental treatments sub-forum and actively encouraged people to post their treatments – everything from the moisturizer elimination tactic to dabbing one’s own urine on the skin. My hope is to discover trends among treatments, simply because we have such a large member base. And I think Tracy S was starting to get some traction with her gene marker idea. In fact I would LOVE for ITSAN to be able to fund the testing of hundreds of people for this mutation. This is one way to get research grants – we show a statistically significant number that lends to our argument.
And while I am on the subject of the gene mutation theory, please see this post in the forum from Rawrfree http://forum.itsan.org/index.php?topic=1859.0. He apparently tested negative for the mutation but was doing the supplement protocol beforehand and getting bad side effects since he is not an “undermethylator.” I know Tracy S. is trying to do nothing but good in regards to this work, but this is exactly why we have been cautious in letting people promote treatments. People are desperate to try any and everything. I certainly was.
I think the operative idea is that we don’t have any PROOF that treatment x or y hastens healing because we haven’t yet taken any ideas to any research entity to formally test in double-blind studies. Until such time we really can’t make any claims. I think it’s something very reasonable to tell our members. “What do you think about treatment x?” “Well, there really isn’t any proof yet, other than perhaps anecdotal evidence from some who are trying it.” But I certainly hope that will change. I mean I’m really not sure what some people would have us do at this point – have a flashing red banner on the site saying moisturizer withdrawal or urine therapy might just do the trick?
PART 3
ReplyDeleteJust about every active, respectable forum has rules. Some are very strict. Some are not so strict. Some let you do whatever you want. Our moderators have attempted to be middle of the road. There are two main areas they focus on – no personal attacks and no questioning decisions made by the admins. These rules are pretty standard in any forum worth visiting. It’s easy to see what happens when there are basically no rules and nobody’s moderating. Just look at news stories on CNN and see the comments below. It’s really astounding what people will say when hiding behind their computers without fear of retribution. If Tracy S. has a rule I am breaking by posting here, then by all means, she has the right to delete it. I see nothing wrong with that. We use a service and we play by its rules. Fair enough. But having no rules inevitably creates an unsafe place. What do you do when somebody starts posting things like, you’re all a bunch of scumbags and losers? You just let it stay there while the whole thing devolves into a back-alley brawl?
For ITSAN, we want a safe place. And we would always hope that if someone finds an offensive post that they report it to the moderator by clicking on the “report to moderator” link instead of publishing a response to the entire community interjecting what they think should be done with such-and-such’s post. And they could also recognize that moderators do their work as volunteers and run full-time lives outside of ITSAN, so their response may not always be timely in addressing it.
And for the record for those who were following the infamous thread, the moderators did remove the comments from the individual who called people scumbags and leeches. Those posts seem to have been misconstrued as officially coming from ITSAN as some people accused us of being rude and insulting. The posts came from a general member.
I imagine I will be accused by at least one poster here of inserting an ITSAN promo piece. Not the intention. And my words no doubt will be picked apart and twisted by this same individual because that is what they seem to live for, at least when the topic is ITSAN. That’s alright. I have spent all the time on this topic I care to so they can have at it. I am just providing another perspective from someone who was there since the beginning, for the people who follow you on your blog who are probably wondering what’s up with all this discord and only know details of ITSAN from the negative people who keep making the same tired old incorrect accusations about us. I am trying to help run a young organization with growing pains, like any other, and I, like the rest of us, am doing the best I can to help it out. In retrospect could I have asked for donations in a different way? Yes. Could I have placed a donation request on the website instead? Sure. But it’s clear that some people will criticize us no matter what we say or do. And whatever the criticisms are we’ll have to live with them and maybe change the way we do things, as we have certainly done before.