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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55440 Posts in 5935 Topics by 6269 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Recruiting patient for Thalgen Finally! Good News about Gene Therapy Trials  (Read 93162 times)
Sharmin
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Little A


« Reply #90 on: June 04, 2013, 12:23:24 AM »

Andy,

Do we have any updates on the trials?

thanks,

Sharmin
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Sharmin
Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #91 on: June 04, 2013, 02:59:43 PM »

Nothing new but I hope to learn more at the Philly conference at the end of this month.
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Andy

All we are saying is give thals a chance.
Sharmin
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Little A


« Reply #92 on: June 04, 2013, 04:18:31 PM »

Thanks Andy,

I hope that more encouraging news will be relayed.  Even small successes are important as they lead to the fine tuning that will bring about the bigger ones.  I am very confident that this study will yield a complete and safe cure for thalassemia and sickle cell anemia.

Perhaps we can get the information from you in person as well will likely see you first week of July:)

Sharmin
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Sharmin
elegantkunal
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« Reply #93 on: July 20, 2013, 05:38:00 PM »

Hi,

i have a dear friend of mine who is suffering from thallasaemia major.She is 25 years old and goes for blood transfusion at AIIMS(india) after every 21 days.Is there any chance she could be well treated, to cure her so that she could live a much healthier life.Which hospitals in US could provide her a better treatment so taht she could live a normal life.Looking at her no one could say she isa thal patient.Please help me in getting her a better life.

Thanks in advance,
Kunal
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Sharmin
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Little A


« Reply #94 on: July 22, 2013, 07:14:31 PM »

Dear Kunal,

The most important thing that your friend can do at this time is to maintain good hemoglobin levels and low iron levels.  This requires adherence to a good transfusion regimine, keeping hemoglobin level above 95 at all times, and keeping iron levels as though as possible - preferably below 1000 (the lower the better).  We can help her in selecting a good chelator and chelation schedule. 

We also recommend many supplements along with a good diet, rich in plant food sources.  We recommend IP6, L-carnitine, vitamin D, vitamin e, zinc, calcium and magnesium as well as others to maintain good health.  Drinking tea with meals is also very helpful

The comprehensive clinic in Oakland, Dr. Vichinisky is wonderful and would give you the best information. 

Sharmin
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Sharmin
Luana
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« Reply #95 on: October 06, 2013, 09:54:42 PM »

What is the latest news about Thalgen therapy? Let's all pray for a better life x
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Andy Battaglia
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« Reply #96 on: October 07, 2013, 02:07:18 PM »

Three patients have been treated with another about to begin. One of the first two patients is now on a reduced transfusion schedule. Each month shows improvement in expression of new hemoglobin. Optimism is warranted.
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Andy

All we are saying is give thals a chance.
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« Reply #97 on: October 07, 2013, 05:46:40 PM »

Great news.

Andy,

Thanks for sharing.
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Pratik
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« Reply #98 on: October 07, 2013, 06:51:11 PM »

Absolutely wonderful news.

Thanks for sharing Andy!

Best,

-P.
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Every child is special.
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Little A


« Reply #99 on: October 09, 2013, 02:03:44 AM »

Thank you for the wonderful news Andy.  Praying for more good news!

Sharmin
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Sharmin
Luana
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« Reply #100 on: October 09, 2013, 07:23:10 AM »

Let's all pray for more wonderful news! 
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catchR
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« Reply #101 on: October 11, 2013, 01:39:30 PM »

This indeed is good news!! Praying for early success, as it would help thals worldover....

Andy,
Any initial details (vital counts, other changes in patients) of how well the treatment is picking up???
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Sharmin
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Little A


« Reply #102 on: October 29, 2013, 06:42:00 PM »

We're approaching one year since these trials began... has anyone heard anything new regarding the trials?
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Sharmin
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« Reply #103 on: October 30, 2013, 06:12:00 PM »

Hi Sharmin,

It seems that progress is slow and Memorial Sloan-Kettering Cancer Center is very careful to announce any news. I am guessing that an official word would not come until first half of next year. However, Andy may be able to get some news (now and then) as he has always been able to update us. Thanks Andy.

Lets keep our fingers crossed.
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Regards.
Sharmin
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Little A


« Reply #104 on: October 30, 2013, 07:05:29 PM »

Canadian Family,

You're quite right.  When the trials began we were warned that likely we would not know much for about two years... I guess all we can hope for is for some positive preliminary results.  I am glad that things have come this far because until now nothing had been approved for human study.  Now we have potentially two sets of clinical trials on the go. 

I look forward to hearing more good news over the next few months. 
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Sharmin
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