The absolute truth is I was ecstatic when I discovered the foundation last year. I sent in an email telling our story, and telling them how excited I was to find them. I received an email back the next day, saying the founder would be emailing me. One day I discovered what our story was put on their website without them asking me. It upset me because I had all of our names, first and last, and the city and state where we lived. I sent in an email asking them to take off all names, and locations. Weeks later, it still hadn't happened. Finally I received an email from the founder and her and I began exchanging a few emails. Of course my first email asked her to take down our story, since they never asked for approval to publish it to the site, or remove all names and locations. In one of her emails the founder told me they had one board member position (non paid) open. I told her I was extremely interested in the position, and not long after she told me I was a board member. I was so excited thinking of all the things I could accomplish. Laws, awareness, and school compliance were all on the top of my list.
After being told I was a board member, the founder scheduled a phone call with me, and sent me my log in info for my official email. Long story short I waited 3 weeks, for a phone call that was scheduled, yet never happened and never cancelled, only to receive an email with an apology, and then rescheduling the phone call many, many, many times. Also the email log in info was not valid. During the many emails to reschedule a phone call that would never come, I alerted them to the problem with my email. Each time, she would send me a different site to go to with yet again another apology, and every site she sent me to said "not recognized" This was were I started getting a bad feeling, and I hate to admit I started questioning the validity of this "foundation" but I shrugged off my suspicions. The founder had also made me an admin on all of their FB stuff (groups and page), and I started seeing questions that were a little troubling. I started seeing people ask where the money was going that had been donated or spent on the bracelets, I noticed the founder had seen the post (fb shows you who has looked at your post in groups and her name was listed) but there was never a response to any of the questions. I figured the founder must be busy, and as a "board member" I could get the info and answer the questions. I sent in an email asking the founder where the money was going, and how it was being used, since I was never told. One other thing that was bothering me was that I had never been told who my fellow "board members" were or how to get into contact with them. When I started sending in emails asking about money and fellow board members, the founder stopped returning my emails. I tried for 3 weeks trying to get this information, and never received one single email back; this was when I could no longer shrug of my suspicions and sent in my resignation letter. A month after my resignation letter they had still not removed my admin status on anything so I had to remove myself. I also sent in another email telling them that I did not trust them, or believe in them and told them to take our story down. This was something they did immediately.
legit, but not one government entity had a record of them, and also reached out to the foundation through email, their fb group, and page, and never got a response from the foundation regarding her concerns. I contacted a new friend in Canada, who owns a newspaper and lives in the same province they were supposedly headquartered in. She did some digging, reached out to reporters, and other newspapers, and....surprise....surprise.....she or anyone she contacted
couldn't find a record of them either. You would really think that if they were having side walk fairs or what ever else they are saying they are on the fb page, that they would want reporters there. I mean they are trying to spread awareness right?????
On occasion I flip over to their fb page hoping to get confirmation that they are legit. About a month ago I noticed
they had been absolutely dormant since last October. Then a couple of weeks later, I flipped over again to find they had posts that I knew weren't there before, dated for months/dates I new were incorrect. I bring this up to let everyone know one trick from fb. When you have a fb page, you can "unpublish" it for however long you wish, without a notification going to the people who "like it" or loosing any likes. It's all there when you bring the page back up. During this time you can
actually back date a post. Let's say that I still had my page, (yes I had a CU page on fb that I deleted and is how I know about this trick). I could post something today, but give it a date of four months ago (lets say I choose 6-15-2013) and that is where fb will put it on the timeline, as well as have that time and date stamp (again 6-15-2013) for that post, even though I made it today (10-4-2013) and people would never know, it doesn't tell you the date was changed for the post. And Since the page was "unpublished" prior to me doing that with say 20 posts, people who had liked the page wouldn't see the posts in their news feed. Instead they may flip over one day and see 20 new posts for days in the past and say "WOW, I haven't seen this in my news feed! Stupid FB isn't showing me this! I hate all their changes!." In reality it was never fb, it was
the fact that the page had been taken off line, and 20 posts were backdated. They have also removed all information or anything that even mentions the ball that they were selling tickets for, again at 250 per ticket. Are you wondering why? I sure am....
I guess you can tell from this post that I believe in my heart that the Cold Urticaria Foundation is a scam. In the past 2 weeks, 2 different women in my group are actively doing things that will bring in some money, and they want to donate it for CU research. Both separately checked out the foundation and decided not to send them money. One of the ladies yesterday called around and checked them out, here is what she said " I checked a Canadian list and the IRS and Cold Urticaria Foundation was not listed. I found a FB page for them... but the owner of the group has never posted any comments in the group that I can find."
Please, please, please Do your research before sending money to them. You can also go to fb, go to Cold Urticaria World's fb page, and read the post the woman who contacted me wrote on their page. She reached out to everyone trying to find answers. Also ask yourself, why during the winter months last year did this "foundation" disappear? Fall/Winter are when a lot of people are diagnosed, yet they disappeared last year during this time. With a true foundation, they would not/will not leave the group they are claiming to represent in a time of need. Not only did they stop posting on twitter (which still has a reference to the ball, and check ut the dates of their tweets) and fb, but their newsletters stopped. Now they mysteriously have started back up again after an 11 month absence. I am sorry, but I don't trust them...