IF I HAD ONLY HAD ONE WISH

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Offline aysam

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IF I HAD ONLY HAD ONE WISH
« on: September 28, 2008, 12:05:39 AM »
[
i]I          ONLY      WISH       THAT 
 :noangel :noangel :noangel :noangel :noangel  :candle :candle :candle :candle :candle :candlehttp://[flash=200,200][move][/move][/flash]


  SOMEONE,       SOMEWERE,         SOMEHOW,       SOMETIME,
 :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grin :grinhttp://[flash=200,200][/flash]

FINDS      A CURE  FOR THALASSEMIA
 :heartred :heartred :heartred :heartred :heartred :heartred :heartred :heartred  :heartred :heartred :heartred :heartred :heartred :heartredhttp://[flash=200,200][/flash]
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline poo gill

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #1 on: September 30, 2008, 03:39:51 AM »
Amen
"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Sharmin

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #2 on: September 30, 2008, 04:42:27 AM »
 :goodluck  We all have the same wish  :goodluck
Sharmin

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Offline nice friend

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #3 on: September 30, 2008, 09:21:53 AM »
SAME HERE , but my wish is a little bit change , here is my wish

  :pray :pray :pray  SOME-WHERE, SOME-HOW, SOME-ONE, SOME-TIME FIND A CURE TO THALASSEMIA, AN AFFORDABLE  CURE FOR EVERY THALASSEMIC :pray :pray :pray :pray :pray :pray
                                                                                      :pray Ameen :pray
                                                                                        :pray :pray :pray
Not expensive like BMT , Stemcell therapy and Exjade ..

Best Regards
Take Care
Umair
« Last Edit: September 30, 2008, 02:44:54 PM by nice friend »
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Ayesha

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #4 on: September 30, 2008, 12:20:36 PM »
Ameen!
-Ayesha

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Offline Smurfette

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #5 on: October 02, 2008, 02:25:11 AM »
We all wish for that to happen,

I have been hearing of a cure for the past 30 yrs, either through gene therapy or stem cells...

Wish this would happen sooner than later!!!!

Take care all

 :hugfriend

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Offline poo gill

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #6 on: October 14, 2008, 10:22:33 AM »
well for gene therapy the docotrs are saying it is much better than what they were talking about in 90's . Andy you need to help me here with the techincal terms. They have found the vectors to take out the Bone marrow and put it back after treating it but I think they are still stuck at putting it back. Andy,  please explain in details. Shall we make a seprate section for all the topics which we heard in the discussion or shall we just put it in the exiting discussion.

Pls advise.
"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Bostonian_04

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #7 on: October 15, 2008, 02:19:27 PM »
We received the CAF newsletter yesterday. There it talked about Gene therapy trials starting in US very soon. The newsletter also talked about the gene therapy trail going on in Paris. I forgot the name of the Doctor but the company associated with the trial is GENETIX Pharmaceuticals from cambridge, MA. The teenager who participated is doing well and continue to make some Hgb after the therapy. It did not mention if he is free from transfusion but it did mention that they already have another patient identified for theie gene therapy trial. So, may be we don't have to wait next 30 years for gene therapy to be available for our children  :pray
Quis custodiet ipsos custodes ? - Plato

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Offline Andy Battaglia

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #8 on: October 15, 2008, 02:38:02 PM »
The first patient was transfusion independent for only 60 days in the French trial. I was told that there is a second patient who is intermedia and has been transfusion independent for over 120 days and improving. I do feel that the US trials led by Dr Michael Sadelain, have a much better chance of success.
Andy

All we are saying is give thals a chance.

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Offline T @ r ! Q

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #9 on: October 17, 2008, 05:03:00 PM »
I wish of a dream machine which filters out iron from the blood, similar to a dialysis machine (actually this is my biggest concern these days  :wink :biggrin)
Falling down is not defeat... Defeat is when you refuse to get up...
The one who kneels to Allah, can standup to anything.

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Offline Sharmin

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #10 on: October 18, 2008, 07:55:57 PM »
Tariq,

That would be soooo cool! 
I think the gene therapy will happen one day, it sounds like they are close and they just have to perfect their technique ??? ???  All they need is more funding!!!!!!  Hopefully the trials will show some success so that they can get the funds they require.   
 :pray :pray :pray :pray :pray :pray :pray :pray :pray :pray

Sharmin



Sharmin

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Offline Sharmin

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #11 on: October 18, 2008, 09:52:47 PM »
http://www.nyas.org/ebriefreps/main.asp?intSubsectionID=2707

Quote
Gene Transfer

While stem cell transplantation has a high success rate among young, HLA-matched patients, researchers hope to find a more universally available cure. Gene transfer may be the solution. "The goal is to introduce a gene to restore normal function in red blood cells, removing the transfusion requirement," said Michel Sadelain, a researcher at Memorial Sloan-Kettering Cancer Center.

"The goal is to introduce a gene to restore normal function in red blood cells."
The process involves removing some of the patient's stem cells, inserting a gene that codes for the healthy globins, and then re-injecting the cells into the body. To introduce the new gene, Sadelain and his team have created a vector based on a lentivirus that is capable of introducing β-hemoglobin genes into the cells. They demonstrated the concept could work in thalassemic mice in 2003. "These mice remained alive only due to transplanted gene," said Sadelain. In the laboratory, they've shown that the gene vector works at least as well in human cells as it does in mouse cells, yielding a level of expression of about 55%.

A clinical trial of gene therapy to cure thalassemia is planned to begin in the next year in France, reported Arthur Bank, a physician and geneticist at Columbia University in New York and Philippe Leboulch at Harvard Medical School and Brigham & Women's Hospital in Boston. The first phase will enroll five patients with β thalassemia and look primarily at safety.
Sharmin

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Offline maryo0m

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #12 on: October 25, 2008, 09:54:55 AM »
star light star bright i wish i may i wish i might be cured from thal this very night  :-\




haha   nice friend yaaap an affordable treatment dont we all want that? :biggrin
------------Spread your wings and fly-----------

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Offline Dori

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #13 on: October 25, 2008, 01:51:45 PM »
Sharmin, a french men with thal. (major?) have had gene therapy around may. Did you hear about that?

One wish is hard :-\

I think the treatment issue of Maryoom is the best (at the moment).

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Offline Sharmin

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Re: IF I HAD ONLY HAD ONE WISH
« Reply #14 on: October 25, 2008, 04:24:39 PM »
Yes Peartree girl,

We have actually posted regarding that patient on this site:

http://www.thalassemiapatientsandfriends.com/index.php?topic=1573.0

I believe there is new information regarding this trial and the patient on the September 2008/CAF newsletter - which I have not had a chance to read yet.

I hope this works!

Sharmin
Sharmin

 

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