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Video's related to thalassemia

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§ãJ¡Ð ساجد:
Zaini,

It was one of the videos that I was talking about but didn't put the link as it is too depressing and it doesn't tell anything about Thal.

The other video was posted on this site; which was a song in some Far-Eastern language with the singer visiting the Thal. Center.

Buddy,
You are already doing a great job for Thal. As much as everyone would like to see you in Singapore; your own personal life is most important too. Please don't let this trip effect your personal life and your family too. Conferences pop up every year and we can get all the knowledge from the net. I hope there is something in this conference worth visiting like a cure or something that makes you go WOW! I don't want it to be another hangout for the doctors and TIF affiliates and "The same old thing" for the rest of us.

I know it would be great to meet everyone and to see the whole thing in person "IF and only IF" you can; but please don't let it effect your and your family's life.

Manal:
I agree with Sajid

manal

asim_aziz:
i agree with sajid too

nice friend:
HI ;
these videos r realy heart touching ... these videos makes me sad its realy feel bad whenu hear that someone who was sufferinng to same diseas u r suffering too has died  ..... its realy hard  to take ur self out of depressing news like  these  ..........  ??? :-\

Andy Battaglia:
Some of these videos are very sad but also very touching. One of the videos on YouTube about thal is called Cooley's Anemia (I am sure Danielle knows most of these people in this vid) and features Lisa's friend, Donna Faiella, talking about her hopes and dreams for life. On the MSN site is a picture Lisa posted of her and Donna and Maria Rizzo. Lisa's captions says "Wow, this was awhile back. We had a great time!!! I miss Donna Faiella sooooo much, she passed away in 1994, she was a huge yankees fan like myself and we had so much fun together. That's my friend Maria Rizzo in the middle, she's so fun to be with. I had a great time as you might be able to tell with that big ol' grin on my face :)"  http://groups.msn.com/ThalassemiaPatientsandFriends/thalpatientsalbum.msnw?action=ShowPhoto&PhotoID=31

The Cooley's Anemia video and another called "I Want to Feel It All" made me feel very sad but also touched me deeply. Although these videos are sad, they are also very powerful messages that are very effective in getting people's attention. There is a purpose to these videos in addition to paying tribute to thals. The message about the need for awareness and prevention is strong, as are the needs for better treatment and a cure. Thalassemia is the most prevalent genetic disorder on earth, yet it is virtually unknown throughout most of the world. Two million people in the US are carriers (minors) and most are not aware of this, nor the potential they have of producing thal majors if they have children with another carrier. I think the whole world should see these videos. There is probably no better "marketing" tool for thalassemia awareness and the need for a concentrated effort on prevention and treatment than these heart-wrenching videos. Education, awareness and testing can reduce the amount of new cases tremendously, as has been done in places like Cyprus, Australia and Hong Kong but so much more needs to be done and the guerrilla marketing tactics of using free services like YouTube to spread the message should not be underestimated. The value of powerful, emotional videos is immense.

I know it can be hard for many people to watch these videos and if it's too much, don't watch them. Speaking as a non thal, nothing has as much impact as seeing the faces like you do in a video, and realizing that thals are people just like everyone else and dammit, why aren't we doing a better job with this? Personally, I find a great deal of inspiration from the videos and watching these particular vids is what made me feel it is so important to go to Singapore and see everyone. Some of the people in the Cooley's video are people I met at the Dubai conference and they are going to Singapore. It's definitely an uphill climb for me to get there, but for me, meeting everyone is what really keeps me involved. Besides, I really do want to find out if Aston Dialo can drive me crazy within an hour as he promised.  :rotfl

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