Goals - Leadership
Here is an excerpt from David's 2005 post regarding Goals: "There are things that we can do to improve our lives. Exercise, diet, and just trying to be positive. These things should work to some extent, but what we really need though is our tubinates back. I think this is possible to an extent. To what extent I don’t know, but anthing is possible. No one to my knowledge has tried to implant turbinate tissue back into the nose. Who says it can’t be done? Scientists have successfully transfered turbinate tissue out of the nose to be used to treat disorders in other places in the body. http://bjo.bmjjournals.com/cgi/content/full/84/3/279 Scientists have grown turbinate tissue to be used in trachea repairs. Scafolding like SIS has been used to replace missing tissue. Scientists are able to grow bone similar to the turbinate bone. The technology is in place to help us. We just need scientists and researchers to implement it in our specific case. I have recently been in touch with some industry leading tissue engineers. One tissue engineer stated that he has worked on tissue much more complex than the turbinates and he thinks he can implement current technology to help us. Here are the initial goals I am trying to achieve: 1. Improve the website and forum so it is more professional looking 2. Unite as many people with ENS as possible 3. Raise enough money to start initial research in tissue engineering." The most important aspects is to get moving on the reseach that will cure ENS and our suffering. It is important also to end ENS causing turbinectomies (giving patients a fighting chance on awareness when a doctor recomends this destruction). I believe both of these can be pursued concurrently, but this must be harmonized. Emotianally driven struggling with each other over personality differences/relegous beliefs and what the "mission" is, is causing an implosion and potentially years of setbacks. Currently, the two main resourses have left the site. I would like to meet with founders. I'm from Massachusetts, and could meet with David, not sure where TE is from but would like to meet with him as well. TE is correct in declaring we have to help ourselves first and foremost as a united front. We have to keep momentum building. Hoosemec

Hoosemec, Thank you for posting this. Yes, let's move forward and work together toward obtainable goals. Let's get the momentum going. And let's all take responsibility for ourselves. I do not believe that anyone has made anyone else leave the forum. I have seen others here dish out far worse than anything Sharon dished. I have witnessed much greater disrespect on this forum--disrespect that has taken my breath away. It does not--it should not matter--who is being disrespectful of others--the perceived importance or contributions of that person should not give him/her license to rip at others, throw tantrums, have exclusive rights on always being right, demand and receive constant homage, emotionally blackmail others, make random rulings, and generally, hold others hostage by means of emotional manipulation. If you think that the purpose of this forum can move forward under a circumstance such as I describe, think again. It cannot and it will not, in accordance with natural laws. If people want to be a part of this forum and its purpose, let's hold each one to the same standard of respect and adult behavior--no special standards for any one person, even if that person wants to bring a million dollars to the cause. Enough said about that. Let's decide what we can do to move our purpose forward.

great post hoosemac and kris I agree with both of you.

One statement of David's especially speaks to me: "I have recently been in touch with some industry leading tissue engineers. One tissue engineer stated that he has worked on tissue much more complex than the turbinates and he thinks he can implement current technology to help us. " Could some of us work together to identify key people in the tissue engineering industry, do research to develop a set of pertinent questions, and then write to these people, or, if possible, arrange meetings? A question I have--how does medical technology become translated into medical expertise? Is that developed by a doctor--a medical entrepreneur-- who takes existing technology, and applies it to a medical condition? Is he/she the one who develops the medical techniques for the application? Could a tissue engineer develop techniques for applying a technology to a medical problem?

Although there are no set rules usually you have a reaseracher, say a tissu engineer, and a product, say acell. Although acell might decide on their own to experiment on ENS usually its the other way. If we contact a research facility and ask them to do research they will but we need money to do that. If anyone is willing to donate 20-50k im sure david or te can get something going money is the key. they dont work for free. Unless someone can find a government grant...they are out there, I looked around for a bit but my lack of understanding legel issues made it beyond my grasp to get into. plus i have other health issues besides ens which makes things difficult at time. if someone wanted to jump onto searching an applying for grants or donate im sure TE would contact whoever is needed. between david, chris, me TE and a few others we kinda hit whats out there like a shotgun but never had the funds to take anythingto the next level. We did raise some once but we didnt get enough to keep the research going.

I see. So if we had money, we could get this done.