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Help Fund the Cure for Thalassemia. 100% Goes to Fund Gene Therapy Trials

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ANI:
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.

suk838:
really hope gene therapy will sucess and will be the cure for all thalassemia patient soon after.

Parin:
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

Andy Battaglia:
Pat,

Best wishes for success and a real cure.

Sharmin:
Pat,

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

Sharmin

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