(Sallman's dream ) Thalassemia free Pakistan

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Offline Andy Battaglia

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #15 on: December 02, 2009, 05:10:13 PM »
Well, I met George and Mrs Tuli from TIF at my first conference in India and have met them both several times since, so yes, TIF is aware of us. They haven't always liked everything we've said here, especially criticism of how their funds are spent, but they do know about us. Unfortunately (in some ways), I have always been about the patients and not the orgs, so the orgs are not always very supportive of our efforts. In fact, there have been some attempts to trap me into inconsistencies so that I might in some way be discredited. This was directly related to my criticism of orgs that spend a lot of money to put the same people up in luxurious hotels conference after conference. Some of these people did not take that criticism so kindly. In the end, all it did was make me doubt these orgs even more. Still, the idea of public service announcements is a good one and I would gladly work with any org that wanted to make this a reality.
Andy

All we are saying is give thals a chance.

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Offline Lena

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #16 on: December 02, 2009, 06:08:10 PM »

Criticism of orgs, Andy? ...luxurious hotels and everything...? ...and how their funds are spent...?
No wonder, they are not supportive. If you ask me though, these are my thoughts exactly.
What is the latest big break-through project run by TIF? Do you know of any? I don't.

Have you heard of the European Organisation of Rare Anaemias, Andy?
It has been created by a Greek - former  member of the TIF  Board of Directors.

Lena.

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Offline Andy Battaglia

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #17 on: December 02, 2009, 06:16:18 PM »
Yes, I have heard of the European organization and in fact, the person I originally thought of to use in the public service announcement became very active in that org and less involved with TIF. She was interested in working with an org that would have a goal of being effective. TIF could be so much more than it is if they would embrace the help of those outside the inner clique.
Andy

All we are saying is give thals a chance.

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Offline Lena

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #18 on: December 02, 2009, 06:36:40 PM »



And that person's name?  In case I am acquainted with her...



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Offline Andy Battaglia

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #19 on: December 02, 2009, 06:46:51 PM »
Wife, mother, medical school student, active in the orgs...Katerina. I had met her in Dubai just a few months before going to the Maldives and she seemed like a perfect example of a thal having a normal and quite active life. I thought she would be a good inspiration to the thals in Maldives and also an eye opener to the many in Maldives who look at thals as second class citizens.
Andy

All we are saying is give thals a chance.

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Offline Waleed

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #20 on: December 02, 2009, 07:06:53 PM »
The clergy has a very strong on ppl's mind ... I myself look like that apparently  :wink  ... An excellent example of this theory put into practice is Saudi Arabia .. a very closed society very loyal to religion and tradition, here its made compulsory by the government through islamic scholars that tests b done b4 marriage and wedding aint going to b registered without that .. and its well observed.
Waleed

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Offline Lena

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #21 on: December 02, 2009, 07:13:26 PM »
Judging by the name, she may be Greek or Greek - Cypriot. I do not know her. I know, though, that there are a lot of thals like her---with a normal, active life who should serve as examples worldwide and this site in a way does that: it brings into surface that thals, despite  difficulties, can have a normal life.
There are a lot of guests in the site who take a glimpse of that and hope for the best.
That is what they need: awareness and hope and someone to show  them that there is a chance.   

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Offline Andy Battaglia

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Re: (Sallman's dream ) Thalassemia free Pakistan
« Reply #22 on: December 02, 2009, 07:23:45 PM »
She's Greek origin and living in Germany.
Andy

All we are saying is give thals a chance.

 

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