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Meeting on gene therapy November 14 from 11:30 a.m. to 1:30 p.m

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Sharmin:
Pat Girondi and Andy Battaglia,

I am praying with all of my heart and soul for gene therapy to cure our children and our friends in the very near future. 

When this happens - I will have both of you to thank for your ongoing efforts and your commitment to us. 
Andy, thank you for your dedication and your courage to support and to be a voice for us.  We don't always understand what is going on - but you do and you have the courage and heart to ask the questions on our behalf. 

Pat, you are in the same situation that we are in - but you have pushed forward and made the changes that will help not only your own son - but all of us. 

You two are heros for us,

Thank you from the bottom of my heart,

Love Sharmin

pleasance:
i agree wth sharmin.......................we gonna pray about gene therapy daily in our prayers ................cos god does answer u

Andy Battaglia:
Thank you all for your support. I do myself no good in terms of my relations with thal organizations and some medical people by being so outspoken, but I am not one to be afraid to speak the truth, and when I am, I will know it is time to sit down and shut up.

Pat is a regular guy, very much like myself. Unassuming and not pretentious. I think these are good qualities but when it comes to negotiating with investment companies, this hasn't helped Pat. These people are used to meeting with other "suits" and a man like Pat may not meet their preconceived notions of what the head of a company should be. I think this has been a big factor on which group got financing for gene therapy, but now that company has had second thoughts, because any fool can see that if you want to succeed at perfecting this direction in gene therapy for thalassemia and do it so it is safe and effective, Michael Sadelain is going to have to be involved. (I would also like to make clear that I am not commenting on other directions in gene therapy, like what is being done by Dr Persons). So, right now when we should be seeing patients start on this trial, we are instead delayed yet again because monetary pressures have been put on our good doctor's employers, who have upped the per patient price and made unreasonable demands for money in advance. Meanwhile, another player has come into the picture and this could provide a much lower cost solution, but will the good doctor be allowed to participate by his employer? Hopefully, all will be made clear at this November 14 meeting.

Now, for my opinion on what should be done. Dr Sadelain's group has worked through Sloan Kettering for many years. It only makes sense to continue and do the trials there. However, SK is completely missing the big picture here as they try to latch on to some short term money. What would I do if I was in charge at SK? I feel like saying "duh" because I cannot fathom how this has slipped the grasp of the decision makers at SK.

Gene therapy is going to be huge and not just in terms of curing hemoglobinopathies. Once this process is developed and is viable, we will see it transferred to countless other genetic illnesses. This very fact alone, should be enough to convince SK to not only cooperate with the trials but to offer their services at no charge whatsoever. This short term investment is going to pay dividends thousands of times higher than any initial development. SK, how do you not see this? Do you wish to be left behind? Or do you want to be the leader in the next generation of curative medicine? SK, the ball is in your end of the court. Are you going to play or are you going to take your ball and go home?

I won't even address the moral issues of leaving patients hanging and the inevitable delay towards a cure that this is causing, because it has become quite evident that this is not a consideration by the decision makers. However, the eventual monetary bonanza that gene therapy will be should be plenty to convince the bean counters.

Sharmin:
I am praying that this meeting goes well.  If this meeting goes our way, the way that all thalassemia patients and their families need it to go, then I believe that we will all have a much brighter future. 

Praying,

Sharmin

Andy Battaglia:
I expect a commitment from Dr Sadelain to continue working with Thalagen to perfect this process. We will know more after tomorrow, but I would be very surprised if this is not what we hear. NIH may become involved as a result.

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