It has taken us quite a long time to get to the very sad place we needed to get to which led us to shutting down the Forum this week. So, for those of you who felt that we were acting in a rash manner you should know that nothing could be further from the truth. Let me tell you, it was very painful to do this, as this our life's vision and work, having dedicated 20 years of our lives to helping those having this condition.

The following are our issues with the FB group–

1-First and foremost FB page was set up without our knowledge, involvement, or consent. 

2-Facebook is NOT private-even in a private forum. Facebook uses your information for it's own agenda.

3-ICAMA site was set up to be an all inclusive site, not exclusive, to offer hope and help. So many have been told or think they are crazy and do not know where to turn. This site provides evidence and solace that that is not the case and that there is a place where sanity can be placed on such an insane condition. And, most importantly-that lives can be saved. It is so important for those seeking help to see that others have walked that path before them and can extend a hand in help to those who do not know which way to go.

4- ICAMA was created to be a community of strength and resources. That cohesiveness was diverted and split with the inception of the FB group-diluting the power of the momentum that had been gathered prior to its existence.  As it stands at the moment–because of the lack of acitivity on the ICAMA site of the last many months, it's visibitlity has been reduced so considerably, that a person suffering from IC is so much less likely to find the ICAMA, they may never get the help that they need. We used to be on the first page and now we are many many pages in! This is unaccpetable considering the help that this treatment has to offer. And, we don't think this is what people are hoping for.

We are actively pursuing technological updates that encompass all of the bells and whistles to further strengthen the resources available for both existing and new patients which include all of the very cool things that all of you are seeking in an active supportive community that exists because each of you are a part of it with us. We would like to encourage you to share your journey, triumphs and struggles in all stages of treatment so that all may benefit from it.

Now that the FB group has been closed, we will re-open our forum and hopefully people will realize how important it is to be present and involved in order to grow this work and knowledge. As we said to a few other people, Boaz and I have no interest in heading some huge research experiment or, having our names go into any medical books. Fame is not what we are seeking. What we are seeking is to touch as many lives as is possible in our life times-to change them for the better-to bring them light where before there was only darkness because of the pain and the suferring. This is the trail that we wish to leave behind us. Unfortunately in today's day and age-this trail is made visible or not visible via the complexities of the ways in which the internet works. For those wishing to support ICAMA, Boaz, and myself, we ask that you stand with us in acheiveing that goal.

As I said, we are presently working on having our site upgraded to support all of the modern technological expectations that each of you has. Now that this has come to a head and is being dealt with it will get done.

Boaz and I have had many plans already and will be setting them more in place for other things as well to reach out more. But, one step at a time. The new and improved forum and site will be first.

The very last thing is this-we would like to express very deep "thank you"s to those of you who sent unbelievable letters to us this week about how we change lives. I could barely get through some of the lines without tears literally streaming down my face and an inability to articulate them outloud to my husband who stood by me as I read them. Those are the sentiments that remind us that what we do is so important and it does matter. It keeps us going when we need to read that next email or get up every morning at the crack of dawn to keep up with the load. It keeps us strong to be the person who reminds you-"it's going to be ok"–because we know it is.

Thank you for listening, thank you for your support, and we look forward to the next steps coming ASAP.

Dr.M & B