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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55293 Posts in 5909 Topics by 6206 Members
Latest Member: jammirati

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: Update and Request from Pat Girondi  (Read 2988 times)
Andy Battaglia
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Will thal rule you or will you rule thal?


« on: April 29, 2016, 06:53:05 PM »

An update from Pat Girondi. I really hope they can get the gene therapy trials at Sloan Kettering moving forward again.
If you have a couple minutes, click the link farther down to Youtube and rate the video.

Dear Family Member,
 
There is lots of good stuff happening.
Errant Gene Therapeutics and Memorial Sloan Kettering are meeting on June 2nd in New York in an attempt to get the Sadelain vector on track.
Bluebird continues with their version of the Beta globin vector.
There are various entities working on their independent gene therapy projects.
No one said that it would be easy but our push to get curative results will be no less than the strength of the love that binds us.
There is a promising Clinical Trial, Sotatercept being conducted by Acceleron and Celgene. The Trial drugs’ goal is to lengthen time between transfusions.
Exciting stuff my family.
 
As you know, the Orphan Dream Band has made its 4th CD. It follows the sequence;
1.       Orphans Soul-finding importance after discovering Orphan Disease
2.       Orphans Journey-exploration of the research world
3.       Orphans Hope-the hope that the Orphans Journey delivered
4.       Orphans Cure-the realization culminating in Clinical Trials for Sickle Cell Disease and Thalassemia
 
Each Album has a few songs dedicated to the title of the album. The productions are therapeutically motivated. They help me focus.
 
Any funds raised are turned into research…
I don’t want you to spend money on the CD’s. My band is run by Enzo Matera and he has a favor to ask you.
https://www.youtube.com/watch?v=i8rL3DsMRCc
This is a link on youtube to our last video. The song is called Fast Break…
He’d like to ask you to watch it, thumbs up or down and even comment. We are working on a schedule for this summer’s events and he believes that your help may be beneficial.
Lovyas,
patg
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Andy

All we are saying is give thals a chance.
Sharmin
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« Reply #1 on: April 29, 2016, 07:18:06 PM »

This is wonderful news Andy!  Thank you for sharing.  I just had a phone conversation with Pat. He sounds very positive.  I am so grateful to Pat.  Prayers to him and his son - as well as to all others awaiting this treatment. 
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Sharmin
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