Pat Girondi Interview and Update

Pat Girondi, CEO of Errant Gene was recently interviewed by a local Chicago TV Show. His latest update and a link to the interview below.

"Hello everyone,
 
I met with researchers at Saint Jude in Memphis on December 20th and 21st. They are a welcome presence in the project. Please send them your warmest prayers and thoughts. I hope that we will be collaborating for the benefit of everyone.
 
I'm presently at home in Italy. I will be leaving for New York on Jan 8th.
 
We plan to order the vector for the first patients before January 15th. (Don't ask me the date of the first patient... It will be in the new year... It's in the hands of someone much higher than me).
 
The New York meetings are critical. Funding for this trial will be a large endeavor.
 
As time goes on we have been blessed to meet concrete people who believe in our project and want to help.
 
Your prayers and warm wishes are more important than ever.
 
I thank all of you for your emails and past support.
 
Over the years this project has been pushed ahead by kind people and imagination.
 
A local Chicago TV Show asked me on to do an interview. I thought that some of you might be interested. Feel free to comment on the google page. Good or bad, I'm always interested to see how I can improve. I know that I'm late... My son Rocco is 18.
 
Here's the link.   http://video.google.com/videoplay?docid=-4040020906670723959
 
Don't forget to look for updates myspace.com/patgirondi.
 
May the Force be with us.
 
pat girondi"

Andy,

This is excellent news.  The sooner all of this takes place the closer we are to the most plausible cure for thalassemia. 

The interview was very interesting too.

Thanks,

Sharmin

Hey Andy ,
nice sharing buddy , beside the interview i also like the song "without wings" . i realy like the music ... thanx buddy for sharing a good news that is to bring hope for thals .. thank you

Best Regards
take care
umair

Hello Andy,

This was very impressive. Two thumbs up to Pat and his team for doing the wonderful job.

I also like to acknowledge your efforts and help to the thalassemia community. I am not sure where most of us would be without you. You are in my prayers, my friend.

Salute.

I also like to acknowledge your efforts and help to the thalassemia community. I am not sure where most of us would be without you. You are in my prayers, my friend

 

manal

 

Hello Andy,

This was very impressive. Two thumbs up to Pat and his team for doing the wonderful job.

I also like to acknowledge your efforts and help to the thalassemia community. I am not sure where most of us would be without you. You are in my prayers, my friend.

Salute.

Exactly!!

Zaini.

Although it is probably difficult for anyone to give a definitive answer - I really hope that the first patient will be prepped and transplanted soon.  I am very eager for things to get under way (as is everyone here) - we have all waited a very long time for this. 

I hope that the treatment is safe and effective!

Sharmin

  in addition to being affordable too 

manal

Affordable is very important too. 

I agree with everything being mentioned above. Affordability is a major issue but I'm optimistic that if a comprehensive therapy is developed it will be bought and distributed as most countries will save money even in the medium term.

One more thing about the interview:
Mr. Girondi is great and his passion immediately comes across. It's this can-do mentality that makes things happen.

I just have one question, which is -I''ll be the first to admit- kind of heavy : I heard him discussing mortality rates. My impression has been that given proper care (regular chelation, proper monitoring of iron deposits) thal children today (and even an 18 year-old like his son) can live lives that have a normal life span. In Greece Thals get married, have children. Certainly this was something that we were told from our doctors. And not just "some will make it" but rather that given the state-of-the-art currently the expectation is that there should be no noticeable difference in life expectancy.

I'm only bringing this up because our (my wife's and my own) hearts kind of sank when we heard the discussion about life expectancy in the thirties. I was under the impression that this was 20 years ago.
Could it be that he was stressing the problems because audiences wouldn't get the importance of managing a genetic problem if they heard people with it can live full lives? I would understand.

I hope so. If not, then we should be doing a reassesment of how we are looking at the long term strategy of managing our daugher's care.

Sorry to bring this up.
And if anything it shows how imprtant people like Pat are, who give us hope via their work.
Our prayers are with him.

I think the average life expectancy figures we hear are worldwide and include people who get little to no care. With proper treatment, thalassemics should live fairly long lives now. Enough so, that several years ago in the US, thal was reclassified as a chronic rather than a fatal disorder.

Hi InGreece,

During our visit to Oakland Dr. Vichinsky mentioned that he has 50 year old patients with thalassemia major who are doing very well.  Remember also that these patients did not have the level of care that our children have as desferal was not available for some of these patients until much later in life.  The outlook for our children is good as long as we stick to a good treatment regimen.  Chelation is the key to survival and to the avoidance of complications. 

In light of some of the new research that is taking place the future is promising for our kids.  If gene therapy is successful - which I am hopeful that it will be - then our children may be cured.  For patients who have antibodies making their own blood and avoidance of exposure to foreign blood should alleviate the hemolytic anemia as well - let's all hope that gene therapy will be successful and available soon. 

Sharmin

I think the average life expectancy figures we hear are worldwide and include people who get little to no care. With proper treatment, thalassemics should live fairly long lives now. Enough so, that several years ago in the US, thal was reclassified as a chronic rather than a fatal disorder.

Thank you Andy.

Thank you Andy and Sharmin.

If anything this highlights the importance of making proper chelation available to people in countries where the health system is less generous.

This is indeed a worthy cause.