Thalassemia Patients and Friends

Discussion Forums => General Chatter => Topic started by: Angel123 on March 07, 2008, 05:08:28 PM



Title: Support By TIF
Post by: Angel123 on March 07, 2008, 05:08:28 PM
Hi,
I have been looking at cases where there should be NO question as to whethera person should be supported for any venture....in particular i would like to highlight Andy's case where he provides support to EVERYONE on a daily basis but cannot source support for something like a conference which can only BENEFIT everyone using the forums.

Please let us see what everyone thinks about this.
thanks


Title: Re: Support By TIF
Post by: Canadian_Family on March 07, 2008, 06:07:45 PM
Angel,

Regarding Andy's case I have no doubt that he should be supported for different ventures including the conference. Not only me but a lot others look up to Andy for answers and he almost always delivers.

Actually, before we discuss the reasons why Andy should be supported, if you could introduce yourself and why are you seeking the answer to the obvious.

Thanks.


Title: Re: Support By TIF
Post by: Andy Battaglia on March 07, 2008, 06:59:03 PM
Angel123 was formerly known as sammyjoe in her posts.

Thanks for the support. I don't really hold out much help that TIF will help me. Being that I am neither a patient or a medical professional, it is very difficult for me to fit in any category. Hence the supporter designation for Singapore. Even though I give so much time and effort to the cause, I am told to register as a supporter so I can pay an even higher registration fee. I asked for Singapore thal association to comp my registration fee and have not heard a word since. Checking the poll results at http://www.thalassemiapatientsandfriends.com/index.php?topic=1518.0;viewResults  tells me that my presence will mean more patients also will attend, so isn't in the interest of TIF and the Singapore thal association to have me attend?

It is very frustrating for me, as the patients and even many doctors recognize the value I bring to the thal world but the organizations choose to ignore me. I admit I am not much of an org person but I am doing the work that none of the orgs is doing. I am also doing much to help patients understand how to use their meds and how to work their way into using new meds, so I agree with Miaki that the drug companies should offer some support. There probably hasn't been a bigger campaigner to have L1 approved in the US and Canada, so perhaps Apotex would be a good place to ask for support. (I just wish they would re-submit Ferriprox for FDA approval. I think the almost universal recognition that L1 is the top chelator for removing iron from the heart, will now enable the drug to be approved). If anyone knows who to contact at the drug companies, please let me know.