Thalassemia Patients and Friends
Discussion Forums => Announcements => Topic started by: Andy Battaglia on May 23, 2009, 06:33:30 PM
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I would like to announce the creation of our companion group on Facebook. We hope to reach a wider audience and extend our efforts to help those with thalassemia and other blood disorders.
Come join us today at http://www.facebook.com/home.php?ref=home#/group.php?gid=78504283219
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This is a great thing Andy - we can reach so many more people on facebook.
Sharmin
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I just talked to Umair about this new group and want to clarify a bit. The Facebook group is intended as a complement to this group. I don't expect to get involved in depth in issues like we do here but rather, I would like to see the FB group used as a way to reach more people and direct them to this group. I also hope we can take advantage of the social aspect of FB to provide more in that area than we do here.
I just posted the topic "The Modern Thalassemic: Living with the Intention of Staying Alive" on the FB group as this is a general topic that can do a lot to effect people's attitudes about thalassemia. I think it's a good starting point.
Please feel free to invite others to join out FB group.
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Andy,
its fine now, i understood the reason of creating that group .. i hope the goal of spreading the awareness about Thalassemia in more people will be achieved by that group of FB as well ... now the thinking is changed , and its now " its a good move buddy " .... :)
Best Regards
Umair
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Great Idea. This is a fantastic tool to spread the word about thalassemia. There are millions on facebook and specially the people where thalassemia is prevalent, it is best to contact them.
I have seen most ridiculous invitations on facebook but this should fly.
Great thinking Andy.
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:thumbsup
manal
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Please keep this group at the center of every information. This is our last refuge for credible, practical and understandable knowledge about thalassemia.
Social networks come and go .. i have been using yahoo360, orkut, facebook, google+, whats app and so on.. another 5 yrs and I will not be active anywhere.
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This group has existed online in one form or another since 1999. I will do my best to keep it going. I see our Facebook groups as a supplement and not a replacement.
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Andy
I was just exploring facebook group to check if i am missing something here from my wife's account (i don't hold anymore) i sent joining request to put a harshest comment on one post from Somenath Mitra about "natural iron chelator"
I think this guy should immediately be banned from thalassemia group. But let me be more democratic and put my anger there it self; i wait for joining request to approve. :)
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Since we already know about many natural iron chelators, I will not summarily dismiss any claim about the subject until proven valueless. There are two aspects to this. First, we need to give the claim a chance to be proven. If this cannot be accomplished in due time, then we can give no credibility to the claim. But second and believe me when I say this is more important. we cannot just dismiss claims without proof, as many will still believe the false claims and waste time and money pursuing phantoms. We have to show that a claim is truly false in order to protect the innocent who will be duped otherwise.
If you are familiar with the expression "give one enough rope to hang himself" I employ that regularly. I will give Somenath enough rope to either prove the claim or hang himself.
Since we are familiar with the natural chelating ability of IP6, green tea extract, wheatgrass curcumin and others, I absolutely support further research into these methods. However, we have yet to see any natural substance that can act as more than a supplement to chelation. I will continue to press Somenath for proof.
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Jay,
I have now responded about this case in a lengthy post in our Facebook thalpal group. As I said, I like to give a man enough rope to hang himself and exactly that happened. The claims of Mr Mitra are not substantiated, and in fact, his protocol has never been used for thals.
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Andy,
The enormous efforts you put gave me more strength.
Some words were spontaneous some words were chosen to nullify the effect and squeeze it to daddy.
I hold on celebration till weekend.