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"Stand up for what you believe in, even if it means standing alone."

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SOWNTHARYA:
 :lovethissite :angel2

Zaini:

--- Quote ---Andy, you can not imagine how much we trust you, we are backing you all the way
--- End quote ---

:yes

Zaini.

Canadian_Family:
Hi Andy,

I am not sure what matter you have to decide on, yes I have been out of touch for very long time. Reading your post I have one word for you 'Diplomatic' like it or not but that is the reality. Take it from a person who has to deal with diplomats every day. We can be brutally honest but usually we loose our effectiveness. Poison them slowly, make an argument, listen but keep inflicting the idea. It is hard to change people who have authorities but make the argument even if you cannot win it. Keep the communication channels on and open, don't shut the doors. By all means speak up your idea but seek feedback, that way you will engage them, let them think.

I agree with Sharmin

"The worth or standing of this group has never been rooted in the approval of any particular group or influential person - it is about helping thals - that is what we are all about"

Even if we loose we still have our integrity intact and we should keep our heads high. Again, sorry if I don't make sense as I don't know the real issue and if this post is not helpful.

Yours truly,

Andy Battaglia:
I want to thank those who have offered their support. It means a lot to me. I fear I have been naive in thinking that patients come first to doctors and researchers, and while this is true of some of our outstanding doctors and researchers, it should never be taken that everyone involved in finding new treatments and a cure have the patients first in their minds.

I want to say thank you to Canadian Family for the advice.


--- Quote ---We can be brutally honest but usually we loose our effectiveness.
--- End quote ---

As much as I want to say some things, it won't help me, It won't help our group. And it's doubtful that it would make any difference at all to those who make decisions. If the time is right and the confidential nature of this issue is lifted, I may have more to say specifically. For now, I will say this.

The more I see how things work in the thalassemia world, the more disgusted I become. It is not patients first. It is profits first and those who market themselves and their products better in terms of showing potential profits are those who get financed. It isn't whose product has potential for patients. It is whose product is perceived as having the most profit potential and this is often based on who is the best salesman and not the best scientist. The result is that we end up with second rate products, while better options are lost due to lack of funding. I encourage all to challenge what makes no sense and to never accept anyone at their word when it just does not make sense.

Thank you.

Manal:
Thanks Canadian family for your precious advice, it made me think about many of my personal expierences which usually don't go well all the way as i deal with things in terms of black and white.. and i had a friend who just told a couple of days ago'' if you reached this age and you cannot accept the ''gray'' you are not yet mature''   
 I guess it will take a lot of time to get mature :rotfl :rotfl

Andy,
Though we don't know the details of what is annoying you, but i can imagine the ''frame'' of the issue and it really scares me because it means we shouldn't trust whom we are supposed to trust and it scares me more because not everyone can
--- Quote ---challenge what makes no sense and to never accept anyone at their word when it just does not make sense.
--- End quote ---
Sometimes despreate situations caused by chroic illiness makes one unable to distinguish between what makes  sense and what doesn't :( You just seek hope in anything you hear

Again thanks for keeping an ''eye'' on us

manal

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