My Dear Brothers and Sisters:

Research proceeds. Clinical Trials are a few months away.

I have been asked again what it is that you can do to help with the gene therapy Clinical Trials for Thalassemia...

My thoughts on this subject:


Michel Sadelain invented this gene 19 years ago. It took all of this time to figure out how to deliver it into the cells. His team now believes that this is possible with some efficiency. I am just a tiny part of his team and not a doctor or scientist.

I know enough to tell you this:

Brothers and sisters, you are precious and special to your parents and friends and to us, the Sadelain team. I personally think about you everyday.

I cherish my time recently spent in India. I felt that I was at home. I felt comfortable in the Taj, on the poorest streets of Delhi and in Krshna's Temple.

I met some of you and for me it was like meeting with dear family members that I had dreamed all of my life existed and was anxious to see.

I sang in a Delhi hospital. I feel that it was the most Important performance of my life.

Brothers, sisters, you can do this for Michel and the team:

Keep yourselves well. Do as your doctor instructs you and learn to be your own doctor.

Exercise, eat correctly. Push yourself to excel in school. Keep your mind fresh and occupied. You have something special that we without your gift don't have.


Your body has learned to do more on less and this does not make you weak... If you open yourself to the wonders of this world it makes you stronger... The mind is infinitely more powerful than the strongest arm...

See the black, the white, the smiles (Chahek) and tears and you will see that you are special and that you have something that the common person does not have.

Of course no one can convince you to use this gift but it's there. Take the time to reflect and find it. Bless us and yourselves.

For gene therapy to work well your body and mind must be in top shape, your iron low etc. If this is the case then it's effect will be enhanced.

I know that many of you are economically poor (you may be the richest person in the world but I'm speaking economically).

For you, let me tell you that only love has gotten us this far. Science is very limited.

Michel's team has done incredible feats with the small amounts of money that we have been able to get to him (small is a relevant term as in the US it costs hundreds of millions of dollars to get the average drug to the patient).

I am a strange man. My friend Paritosh can testify to this.

I am an expert at nothing but I have always been good at doing something with small amounts (many say that it's the italian in me).

I am Rocco's voice and Chahek's voice. In many ways I represent the hopes of Sangita, Edmund, Ron and Bassam.

This is a large responsibility and not easy... especially when your voice is not so good and your mind functions in a strange way.

DO NOT discount the energy created by your good deeds, by your quality work in school or outside the home.

Help me through your kindness to others. A billion dollars without the love and positive energy does nothing. It sits in a bank. If people like Michel don't use their imagination and minds the money is paper or numbers on a bank computer.

The energy and love that you create by your work and your good deeds flow into the same well that Michel takes his water from.  This water nourished his imagination and mind.

When I am feeling like a caged animal I dip into this stream. I can't remember how many times that I have  broken the cage.

We were very poor growing up and my mother taught me the importance of prayer. It remains her most important gift to me...

So dear precious person, do good for others and concentrate on life. If you can then send me your experience explaining your good deed it is more important than money to me. Money feeds research, love feeds the soul. A soul does not need research or money to survive. Research without a soul is worthless and can even be dangerous.. Unfortunately I have witnessed this more than once by small researchers and a large pharma company.

For those of you who have some money you can give it to your president Shobha Tuli (Thalcind@yahoo.co.in) and tell her that your wish is that it goes towards 'gene therapy' work... Thalagen.

The most favorite method has been the downloads of music.

For physical cd's there's;

Patgirondi.com
Cdbaby.com
Amazon.com

For downloads (actually the present method of choice) there's);

Amazon.com
Cdbaby.com
Itunes.com

Also, to promote our cause as people for change you may get enjoyment by seeing the latest Salvatore Centoducati video. My words, voice and the 'Orphan Dream Band' music.

I'll be on radio and television in the Chicago land area. Hit and comment. Our voice grows from this...

http://www.youtube.com/watch?v=qL5z_v69RuY

For those of you who want to invest contact Paritosh Landahni (paritoshl@yahoo.com) or Pawan Goyal (skoyal@sify.com) or Jason Feldman at (errantgene.com).

Many have sent letters to Human BioSciences. I was with them the other day and it helped immensely. Now send your emails to claudio.cavazza@sigma-tau.it.

Dear Don Claudio,

I am from Bangladesh and appreciate your interest in thalassemia etc.

Let him know how supportive you are of Sigma Tau's interest in our cause.

What more can I say?

Love you all and when you give up I cannot go on.

I arrived 1:30 last night in Boston on a bus from Washington. The meetings have gone well up till now and I have a Boston meeting of importance coming up. I am walking and writing to you, praying and thinking...

Since I was a little boy I play 'quarters'. Me and my friends would walk and run for miles with our eyes on the ground looking for money. The one who found the most won and we usually put it in a community fund to buy a beverage or snack.

One of my best friends, Kevin and me still play every morning at 6 AM when I'm in Chicago.

He gets mad if I'm late. He says that I do it on purpose to disturb or throw him off his game (he might not be all wrong).

We have so much fun and we tease each other about needing glasses and distracting the other guy etc. He says I hog the street by taking zigzag steps (can't get anything over on him).

I just found 11 cents... All for the research... (I actually found 12 but the penny is stuck to the street and if you can't put it in your pocket it don't count).

Pat g