Discussion Forums > Working Towards a Cure
Help Fund the Cure for Thalassemia. 100% Goes to Fund Gene Therapy Trials
KHALIFA:
HI
Dear all i read all what is written and i really felt what do you feel ..don't forget am a father of X-thalassemia child am really felt that do you want to know and find out one day there is new transplant for thalassemia PpL like what you discuse a bout GENE THARAPY ...
Dear all i don't want any body get down a bout what i said but every body know there is always A HOPE also me i hope one day i hear somebody find out good treatment for thalassemia ...
am personally ask PROFF. LUCARALLY (i like to call him FATHER OF THALASSEMIA) a bout the gene tharapy last april when i was in italy to make rotin check up for ABDULWAHAB i ask him what a bout the gene tharapy .. he just close his computer and start to talk with me a bout it he told me they start to make reserch since 1975 and every five years they say we are going to find out the result after five years more...
and the reserch still there is no good news ... also he replay he told me the only treatment for thalassemia availeble now is BMT or stem celles like what i did for my son ..
Dear Rutuja mother i know what do you feel because as i said am afather of X-thalassemia child who i made for him 2 operations one in 2003 and 2005 .
first one was BMT and the seconde is STEAM CELLSE from the same donor who was is his sister .. i pray every day for those children who they suffering from thalassemia and i fight for them right her in my country ,,, but we still i don't know how much and how long to find out the prober result of the GENE THARAPY ...
Dear RUtaje and Rutaja mother my heart with you and belive me i got a feeling you talk a bout me also and my son ...
in the end i would like to say
DON'T LOOSE YOUR HOPE
khalifa
state of kuwait
ONE FOR ALL &ALL FOR ONE
rutuja2000:
gud morning
Mr.khalif
i really want 2 cure rutuja.but iam helpless.
b'coz i cannt found any donor for transplant.i just want 2 go for stem cell transplant.
pl.pl. help in this regard.
thanks for reply.
waiting 4 ur reply.
from where i will did the stem cell transplant.
can u send the addresses of that centers who are did that transplantation
bye.
god bless you
Zaini:
Hi Rutuja,
just a little note,that wether you go for a BMT or stem cell transplant,in both cases you'll need HLA matched donor for your kid,and transplantation is not an easy process.it's a big decision.
ZAINI.
Andy Battaglia:
Hi Rutuja's mom,
BMT is both costly and risky. I think if you go to Singapore Dr Tan will advise you to continue with your child's current treatment since your daughter is doing well with her health. Deciding to do a BMT is a huge decision and you need to be aware of the dangers. I do not want to mention any names but a member of this group recently lost their child after a BMT and several of the Maldivian children who have undergone BMT's have also passed away. This is very sad and makes me think we need to work very hard to make sure parents are well aware of the risks before proceeding. Some do succeed as with Omega and Khalifa's children, but it is not an easy path to follow. I spoke to Dr Lucarelli at the Dubai thal conference in 2006 and he told me that Khalifa's son was very fortunate to have survived, as most patients with severe graft vs host disease do not survive.
If gene therapy does prove to be a cure it will be many years before it is widely available as long term studies will be needed before it is ever approved. However, once more trials are underway, the patients chosen as subjects, will be those in the best of health. At this time there is no process for applying to be a participant in trials but if early trials show some success the trials will be expanded to include more patients. As with many drugs, it may be that the only way to get gene therapy for many years to come, will be to be part of a trial.
I have emailed Pat Girondi to inquire about shipping his cds to Asia. I will update when I get a response.
Andy Battaglia:
Pat Girondi replied that the cds can be sent internationally.
--- Quote ---We can ship it.
Sent wirelessly via BlackBerry from T-Mobile.
--- End quote ---
http://cdbaby.com/cd/patg
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