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a-cure-for-beta thalassemia-from-our-own-bodies

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Parin:
Thats great......looking forward to it...I will pray that it will come soon to help all thalessemia.

Syaida Lee:
It's really a shame that the donation can only be given if you have a mailing address in US. Just how are we going to get the funds through from this part of the world?? I really wish the Thalassemia societies in all our home country will do a charity drive to collect funds for this GRT research, imagine the benefits to all the thalassemics in this part of the world if successful. It's a bit controversial I can imagine to get people to donate to something that is not 100% foolproof. But, if you don't try you, you'll never know. 

love and prayers:
hqk-1001 trials are only being carried out on thal intermedias,i hope Robert H. Broyles trials are used for thal majors too!

i know this may sound a little shady but you know how asunra and kelfer ar avialable as cheaper affordable drugs. do you think they'll make a cheaper hqk-1001 or the plant compound that has been discovered by Robert H. Broyles?

 india is great that way!!!i'm amazed they haven't made a hqk-1001 already. the sad  part is that there are some people that earn less than a dollar a day and the need for affordable drugs is very important!!!!

Andy Battaglia:
There are reasons why a hemoglobin inducer would be trialed on intermedias, but this does not mean that once approved, the drug wouldn't also be used for majors. I guarantee that it will be, because doctors will prescribe it once it's available, just as some US doctors had patients using desferal and Exjade together as soon as Exjade was approved. I think it would be much easier to gauge the full effects of a hemoglobin inducing drug in intermedias who could go without transfusions for much longer periods than majors can. The next generation of hemoglobin inducing drugs will free intermedias from transfusion for the most part and offer a decrease in transfusion frequency for majors. In some countries like Iran, hydroxyurea is already used to decrease transfusion dependence in majors and a better drug will be most likely used worldwide, because face it - transfusions are something of a wild card in thals and minimizing the amount of transfusions has to be the key to treatment, so the wild cards can be reduced. Less antibody reactions and less stress on the heart from transfusion are only a couple of the benefits. So, if you can cut in half the transfusion frequency, you will be doing majors a huge favor. These drugs are destined for use in majors. I would also not be surprised if the next stage of Dr Perrine's trials do include majors.

Sharmin:
Thanks Andy,

I'm hopeful that these changes will take place soon.  It would be a dream come true.
Fewer transfusions, less iron and less chelation would equal a more normal life and quality
Of life. 

We are set to meet Dr Vichynski in August.  Hopefully
He'll have more info too.  Lil A is doing a thalassemia
Camp in LA with all thalassemia children.  He's
Really excited.  It'll be a great opportunity for him.

Sharmin

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