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Author Topic: Pat G Brings Long Awaited News. Soon. Very Soon.  (Read 4132 times)
Andy Battaglia
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« on: August 04, 2010, 07:25:09 PM »

I want to share Pat G's latest note. It is most significant. The trial is about to begin and we should have some idea on the efficacy of gene therapy by the end of the year. I want to make a note about what Pat says about thals living longer, and yes they do and this group does an impressive job spreading awareness of this new reality. But what Pat says is true. The risk of regular transfusions and the effect on the heart and all the nasty little extras of thalassemia, remain a reality for every patient. A cure is the only sure way out from this life of always wondering "am I next?" Believe me, I never pictured my life leading to where I am and being in a position where friends regularly die because of this defect in genes. But I am here and I want to stop hearing that another thal succumbed. Enough! We have to deal with this scourge as a united world before the emerging epidemic of thalassemia is fully known. Read Pat's words and when the tears fill your eyes also, you will understand that each one of us needs to step up our efforts to make this all happen. Don't pass up any chance to educate, to spread awareness and also seek out funding for these trials, whether small, as in purchasing Pat's CDs or big, as in if anyone is in a position to interest investors in bringing an end to thalassemia. Pat talks about Riazz and we all know these prayers, and we have just once again had to deal with another death of one of our members here, Farooq and just a couple weeks ago, we lost another friend in the Maldives, my pal Ubaid, whose gifts sit here in this room while I type. Enough! Enough! Enough! The time has come. In every way possible, we have to help make this a reality.

Quote
Dear family,
 
The first patient and the first batch of 'Thalagen' has arrived in New York. It's been a long road for all of you. We should have a good idea about the efficacy this year.
 
This time when I began to write tears filled my eyes. I'm not sure why. It could be for our brother Riazz in South Africa who at 32 is in an incredible situation. Doctors Cappellini, Maggio and Xia rushed to send advice to Naushad his brother. I guess that I realize that Riazz is also my brother and I don't want to lose him.
 
I can get so impatient and I'm tired of speaking with specialists who keep under-lining the fact that Thal patients live longer. I mean through all of these years the biggest enemy has been an almost indifference to what it means to go into a hospital every 20 days and transfuse, the possibility of another infection.
 
I'm ecstatic that progress has been made for safe blood and iron chelators. I really am fortunate being Rocco's father and watching him at 20 live a normal life. And please don't think that I'm being ungrateful for all the advance.
 
Maybe I'm in tears because over the years I have told you that we were there and then another obstacle popped up to slow our progress. Maybe I'm sure that this will happen again and I will again disappoint. .
 
We have been so fortunate to have so many good people to care about us. I really am humbled daily when I reflect on this fact.
 
August 7th I'll be doing a concert in the province of Bari in Italy. The benefactor is the Orphan Dream Foundation. I'm doing 18 pieces... all but 3 are originals. The 3 covers are Louie louie, Johnny be Good and Sweet Home Chicago. I'll try to tape some of it and get it on Youtube so that most of you can see some of it.
 
We're working on our 4th CD in the 'Orphan series'. I just finished my first two screenplays in Italian as well. That makes 7, 5 in English and 3 in Italian. I often ask myself why I write, why I sing, why I get on the stage at all. I guess it's because if I didn't that I wouldn't be here. I've been to the valley so many times for short trips that have been literally unbearable. Thank God that they were short trips.
 
If anyone wants to read the screenplays, they're in writing in the patgirondi.com site. My favorite is 'Faded Gene's though it was actually 'Blind Faith' that was a runner up out of 3,200 screenplays in a competition sponsored by the American Screenwriters Association...
 
I've recorded about 80 songs, 40 published. 2 in an award winnig Italian movie. one in an award winning cartoon.
 
I'm not really talented,  just frustrated I guess.
 
I'm not sure why I'm rambling on tonight. I still have the tears in my eyes and the r's look like t's and the i's look like l's.
 
It's kind of an earth shattering event. I mean it's the first serious trial for the genetic cure of a major disease...
 
The 4th album will be called 'Orphan's Cure' or 'Orphan's Catholicon'... What do you think?
 
OK. Please pray for me because I'm in the valley and have come out of it seemingly 100's of times and how can anyone expect to always come through?
 
What a team... Michele Sadelain. Isabelle Riviere, Chris Ballas, Sam Salman, Jason feldman... We have truly been blessed.
 
Anyway, it's 9:45 PM in Italy. I'm looking forward to resting but there's about a million thoughts that gnaw at me all through the night like being in the jungle without a mosquito net. Of course you all know better than I what it means.
 
Why am I so somber bring such good news?
 
Maybe it has nothing to do with the 'Thalagen' project. It's deffinitely not stage fright. Anyway, please send your warmest thoughts and prayers to our brothers Naushad and Riazz and may the 'Orphan's Dream' be your dream.
 
pat g
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Andy

All we are saying is give thals a chance.
Zaini
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« Reply #1 on: August 05, 2010, 01:58:20 AM »

I wish i hope and i pray that they'll come through these trials successfully,it is of course right that our kids are at continuous risk of getting infections or diseases through blood,we do tell others that thals can live longer and have a healthy life,but whom are we kidding.I just try and make myself forget these things or life becomes unbearable,coz i know even if gene therapy dpes work and becomes available for patients,it will take years to get it done in my country.

Thanks a lot dear Pat,Rocco is lucky to have you as father,we are lucky to have you as friend.

Zaini.
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^*^Xaini^*^
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« Reply #2 on: August 11, 2010, 02:04:29 AM »

Andy has the trial begun?
could you ask Pat to give us updates more often.
i pray that its successful and the solution to all our problems!
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Canadian_Family
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« Reply #3 on: August 11, 2010, 08:01:49 AM »

People like Andy and Pat G are the jewels of this world. They are true heros. God Bless.
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AL
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« Reply #4 on: August 11, 2010, 10:25:37 PM »

People like Andy and Pat G are the jewels of this world. They are true heros. God Bless.

I CONCUR 
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