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International Thalassaemia Conference registration
Eponine:
Hi Andy, Smurfette
I hear you. The registration fees, although it may seem like a really high price to pay, is actually heavily subsidized. We do not make any profits at all in this price, in fact, we make a lost becuase the cost price per participant is definitely way more than that.
If we could have our way, we would furthur subsidize all parent, patients and supporters. Yes, there is a supporter component in our registration for people like you. In fact, I was thinking about you when I suggested that component becuase there needs to be a submission of medical report from your doctor if you were to register as a patient. I really hope to see you at the conference not because I want to 'earn' your money, but becuase I want to see all of us who are pouring our hearts out here getting together finally and being able to see each other to continue encouraging and spuring each other to carry on in life.
I get what you mean when you talk about TIF. Sometimes I wonder if they have forgotten about their objective of setting up an organisation or have they been blinded by money.
As for the dinner, it is the gala dinner which is optional. You can choose NOT to go for it and it will not affect your education from the conference in anyway. It is priced at so high because of some difficulties. We have hotel at different rates. Will those meet your budget?
Oh BTW Andy, the fax no. requirement has been removed.
Smurfette:
Eponine
Well I think that TIF has forgotten about their objectives of setting up a organisation... They have been blinded by the money side of things... As they say money talks and B***** walks... Well its true in many ways...
As for the dinner its the dinner that most patients go to and have a great time...Thats when we can all get together in a relaxed atmosphere and goof around, talk to others and even get to know some others there that they didnt see while they were in the meetings or what ever....
Its still a long way for the conference..I cant make any decisions on attending now...I dont plan anything until the last min...Because when i do plan things from months ahead, they usually dont go according to plan..
Narendra:
--- Quote from: Andy on February 03, 2008, 09:54:41 PM ---I am in a somewhat unique position being neither a patient nor a family member and not a medical professional. However, I have had more than one patient tell me I do more for thals than all of TIF combined. But I have no funding at all and every trip has been paid for out of my own pocket. Sponsorship by an org is unlikely as the patients come first, as they should. In the end, my desire to do what is right (Gandhi said “You must be the change you want to see in the world.” ) has to be tempered by what is financially viable for me. As much as I want to see a world where decisions are based on what should be and what is the right thing to do, regardless of one's own self-interest, I find what I can do is extremely limited by lack of funding. I have considered starting a foundation but time limitations make that unlikely, as between my store and the thal site, I spend over 100 hours working per week. If any lawyer wishes to donate time to help me set up a foundation, please speak up. Don't be shy now. hehe.
--- End quote ---
Andy,
I salute your dedication and I like it more because this is for people most of whom you don't even know, which is really selfless. I think you do so much for other's that I feel like your attendence would benifit others. Your insight helps a lot to those looking for answers plus you think from a patients prospective.
For the financial side, I am ready to chip in with some money for you to go and attend the conference. I think that would be a huge plus for us. Members, what do you guys say? I don't even know, if I should be mentioning this as it goes into financial issues, but this is something I feel we should do for our superhero (Andy). What say folks?
Bharat:
Well said Naren,
Andy,
You are a unique individual. We have a beautiful 13 month old baby boy. When my wife, who is Thal Int was expecting, many on this site offered their advice and support. Your support, hard work and love is greatly appreciated. I understand Naren's hestitation to bring up financial issues on this site, but I am prepared to help out in whatever way I can.
Regards
Bharat
Hope:
I agree with Narendra...Andy, within a short time, I noticed that you are an wonderful individual, giving all the support to the forum members. I am also wiling to help on your trip to singapore.
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