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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55105 Posts in 5866 Topics by 6148 Members
Latest Member: Disead

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: Help Fund the Cure for Thalassemia. 100% Goes to Fund Gene Therapy Trials  (Read 64405 times)
Zaini
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Life is too short to be perfect.


« Reply #15 on: November 06, 2008, 12:06:54 PM »

 

Zaini.
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Sharmin
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Little A


« Reply #16 on: January 09, 2009, 07:56:34 PM »

Hi thalpals,

I have been sending messages to friends and family to begin buying CDs again - If we all do so it should make a big difference.  I am praying for this therapy to work.

Sharmin
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Sharmin
Manal
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mother of thal intermedia child


« Reply #17 on: January 09, 2009, 08:06:32 PM »

Thanks Sharmin, i will do the same too. Lets all pray for their success
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Sharmin
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Little A


« Reply #18 on: January 26, 2009, 08:37:04 PM »

Hi Thalpals,

Something for us to look into:

Bill & Melinda Gates Foundation

http://www.gatesfoundation.org/Pages/home.aspx

Sharmin
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Sharmin
Manal
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« Reply #19 on: January 27, 2009, 07:45:13 PM »

Thanks Sharmin, i will contact them ,hopei receive a reply

manal
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ANI
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« Reply #20 on: May 06, 2009, 01:36:25 AM »

When my Son was first diagnosed with Thal major, I was looking towards the gene therapy very eagerly and impatiently. I use to read all the news related to it and when I saw the web site of pat Girondi ,I was almost thrilled. In errantgene.com they have mentioned Thalgan as a product in pipe line and that the RAC has been approved by FDA in 2007.
But now standing in may 2009, it seems like a oassis n desert. More close you are more further you become. First trial. first dose, vector, lentiviral and what not.
Friends, I have not lost my faith but perhaps the force whch requires for driving the trial is somhow missig. People are concerned to extract the investement  from the limited patient base of Thalasemia.TRhey are more concerned about their ROI then serving the mankind. The funding from State government is insufficient. The demonstaration and road show from us is lacking. The profit factor more dominat then  Human care factor.
I think , if all of us want to see it as a success we shoukld not just wait for Mr Pat girondi CD to sell rather we should write to our state Giverment to arrange for fund amidst Economic meltdow. The priorities for research for thalassemia needs to be decided and worked upon.
Let all of us take a pledge to write at least 100 letter to all that Governement Organization, NGO's, Volunteering organization, Rich individual and who so ever matters.
If person like Bill and Melinda gates hear to us and person like Tiger wood supprt us, perhaps the day os success will not be far.
Lot of Regard to all of you who are directly or indirecly helping Thalassemics and not taking it as a burden.I am doing my part of job and will continue doing this, I promise.

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suk838
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« Reply #21 on: May 06, 2009, 01:02:30 PM »

really hope gene therapy will sucess and will be the cure for all thalassemia patient soon after.


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Parin
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« Reply #22 on: September 02, 2009, 11:41:19 AM »

GENE THERAPY TO MAKE HISTORY IN OCTOBER

Dear family member…

I leave for Pavia in the evening. It will be a historic trip.

Your dreams and prayers, your hard earned resources have made the trip possible.  A major disease, (thalassemia, my son Rocco and your son Rocco’s gift) will be treated genetically for the first time.

I will not rant about all of the success that has accompanied us though the halls of the FDA and the canals of science.  I would like however to thank you for your presence as comrades and mentors.

October is the 17th anniversary of Rocco’s diagnoses. October is the month when the first patient will leave for the US from Italy to be treated. I don’t know who he is but, for me, it is Rocco. The patient will go through the various phases and begin the therapy after these things are finished.

Your company has grown to 17 patents. We will next tackle Sickle Cell Anemia. Everything that we have learned until now will shorten the trip for Sickle Cell.

I will probably spend more and more time in the Mediterranean where there are a hundred thousand patients. I will build here as we have built in the US. As you know we have collaborating centers everywhere from LA to Singapore.

Our new president is paving the way for a business plan that will ensure that the Orphan Diseases are always a consideration and the life of EGT.

May the Orphan Dream be your dream.




Pat Girondi

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


« Reply #23 on: September 02, 2009, 12:03:12 PM »

Pat,

Best wishes for success and a real cure.
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Andy

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


« Reply #24 on: September 02, 2009, 12:06:22 PM »

Pat,

Best wishes that this will be successful for the patient who will be treated and for everyone else,

Sharmin
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Sharmin
Zaini
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« Reply #25 on: September 02, 2009, 12:21:58 PM »

Pat,

Thanks for sharing this,may our dream of cure come true  .

Zaini.
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suk838
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« Reply #26 on: September 03, 2009, 12:27:59 PM »

Good luck and all best, praying for the good news.
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nice friend
Thalassemia Major
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If I Can, Why Not You??... If I Can U TOO !!!...


« Reply #27 on: September 05, 2009, 10:58:56 PM »

Beest Wishes & Regards


Umair
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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
Manal
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« Reply #28 on: September 15, 2009, 12:09:44 AM »

So excited!!! Wish you all the luck, you have been working hard on this and definetly God will grant us a cure

manal

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


« Reply #29 on: January 01, 2010, 06:12:43 PM »

2010 will be a very big year in the world of thalassemia. The group led by Dr Michael Sadelain is about to begin the gene therapy trials in humans and this should commence by springtime. By the end of this year, we should have a good idea if gene therapy will provide the long awaited cure for thalassemia. I believe that this will succeed and that the only thing that has held it back is lack of funding. As long as my government makes financial decisions that places paying for drones to launch missiles over the heads of many of my friends, who also await this cure, we cannot hope that this same government will EVER give the same priority to saving human lives as it does to destroying them, so we must find funding elsewhere. Our friend, Pat Girondi has dedicated much of his life to helping to fund a cure for orphan diseases and especially for the thalassemia that has touched his own son. Pat donates all proceeds from the sale of his CDs to the Orphan's Dream Foundation to help fund these gene therapy trials. If you like music and want to make a small donation, and in turn get some fine music, please go to this website and buy one or more of Pat's CDs. You will be helping to fund this incredible work that will eventually provide a cure for thalassemia.
http://www.cdbaby.com/cd/patg3#

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Andy

All we are saying is give thals a chance.
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