Thalassemia Patients and Friends

Discussion Forums => General Chatter => Topic started by: aysam on September 28, 2008, 12:05:39 AM

Title: IF I HAD ONLY HAD ONE WISH
Post by: aysam 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]
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: poo gill on September 30, 2008, 03:39:51 AM
Amen
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Sharmin on September 30, 2008, 04:42:27 AM
 :goodluck  We all have the same wish  :goodluck
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: nice friend 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
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Ayesha on September 30, 2008, 12:20:36 PM
Ameen!
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Smurfette 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
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: poo gill 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.
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Bostonian_04 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
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Andy Battaglia 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.
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: T @ r ! Q 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)
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Sharmin 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



Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Sharmin 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.
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: maryo0m 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
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Dori 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).
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Sharmin 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
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: maryo0m on October 25, 2008, 10:12:42 PM
Peartree Girl , yap a good treatment will do :)

sharmin,,, really? plz inform us if you had more details soon thnx  :biggrin
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Sharmin on October 25, 2008, 10:43:25 PM
I will see if I can get access to this newsletter.  I am sure the company will post whatever results that they can 'make public' as it becomes available. 

Remember, this being the first set of trials since 2003 - when Henry Gelsinger unfortunately passed away during a gene therapy trial - the main purpose of these trials is to ensure safety.  Of course, that death was related to the nature of the disease (immune deficiency) and the nature of the treatment required to treat that particular disease - however the whole thing gave gene therapy a very bad press and delayed other gene therapy trials for years. 

Genetix Pharmaceuticals seems to have established safety - so far - and some efficacy with their first patient few patients.  Let's see how this continues to go.  Remember also the inital attempts to cure a form of blindness earlier this year, in which the dose given was minute because they were testing only for safety - and yet there were able to see significant improvement - not the full effect because the dose was very small. 

Please see the following thread:

http://www.thalassemiapatientsandfriends.com/index.php?topic=1675.0

Quote
Gene therapy for a rare type of inherited blindness improved the vision of 4 adult patients!! 
Success was reported by two separate teams of scientists treating Leber congenital amaurosis (LCA).  As reported by the National Post in Canada. 

A common cold virus (RPE65) was used to deliver the normal version of the gene into one eye of each patient (the other eye was used as a control).  The patients went from almost complete blindness (only being able to detect hand movement) to actually reading lines on an eye chart with the treated eye. 

These patients were not expected to improve much - because they already had significant damage and were given only low doses to test for safety of the procedure.  Surprisingly, the gene therapy actually provided benefit for them. 

This is great news for patients with LCA, gene therapy and anyone with a genetic disorder.  I hope that this increases confidence in gene therapy!! 

I think that it is very important for us to understand the purpose of these studies - and watch for the ongoing results before we get either too excited or disappointed.  Frankly, I think what was said at the Singapore conference was premature and frustrating.  Gene therapy needs support and making these comments - not fully understanding the context can be harmful. 

If I come accross the CAF article I will let you all know.  Things seem positive right now form what we can all see, there is reason to hope but no one can say for sure. 

Best,

Sharmin
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Dori on October 26, 2008, 12:39:07 PM
September 2008/CAF newsletter What newsletter?  :dunno
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: nice friend on October 26, 2008, 12:45:13 PM
Hi Dore ,
Sharmin is talking abt the Newsletter of the Cooley's Anemia Foundation's ( CAF ), NewsLetter which issued in September 2008 .. CAF Issue's the newsletters time to time every year , which guide's toward the thalassemia its treatments and ongoing researchs ...  last CAF newsletter were published in september 2008 and sharmin is talking about to get a link of that latest newsletter ,she got that and mentioing about that in above, in her post ...
i hope it is usefull that i mentioned above if i m missing something then dont hesitate to ask that again ...

Take Care
Umair
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: maryo0m on October 26, 2008, 03:23:07 PM
Thanx nice friend and sharmin about this information I didnt know that we had a news letter  :dunno
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Sharmin on October 26, 2008, 03:45:50 PM
you can email Cooley's Anemia Foundation (CAF) to receive the newletter:

info@cooleysanemia.org

This is the letter Bostonian refers to in an earlier post on this thread

Quote
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 


this is the latest update available on the trials.
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: maryo0m on October 27, 2008, 12:51:43 AM
THANX ALOT  REALLY  :hugfriend
Title: Re: IF I HAD ONLY HAD ONE WISH
Post by: Sharmin on October 27, 2008, 01:53:23 AM
Maryoom,

You are very welcome  :hugfriend