Discussion Forums > Working Towards a Cure

Thalagen™: Gene Therapy Treatment for Thalassemia to Begin Trials in 2008

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pat girondi:
Hi everyone, it's Rocco's father, pat girondi. I believe that it is correct that a thal patient can live longer than ever. There are doctors that have said to me that a thal patient treated effectively can live a normal life span.

Unfortunately this is good news that often has bad ramifications. I remember the terror of transfusing Rocco in the early '90's. I'm sure that many of you can.

I will not accept that at anytime a new virus (known or unknown) can enter into our blood supplies and devestate our family much as hepatitis and in some cases HIV has done. I will also not accept that the attitudes of many, including our own doctors has relegated the search for a cure to some unimportant position because in their opinions thal patients are well off compared to people in other situations.

When a doctor commented to me that I was exaggeratiing in my aggressiveness to find a solution, I asked him how many transfusions had he had in his life. The answer was 0.

If anyone wants a cd (for free) just let me know. The new one, 'Orphan's Hope' will be out in less than 60 days. In September we actually raised almost 5,000 dollars. This pays a vector consultant for a month.

I apologize if any of my views or statements may have caused any problem. I as you want to see this whole project work well. I, as you will then dedicate the rest of my life in helping others with 'Orphan Diseases'. Sickle Cell is the next planned target.

Again, I apologize if my enthusiasm or statements hurt or disturb. I love all of you.

pat g

Andy Battaglia:
Pat, I'm looking forward to meeting you in NYC in February.

Sharmin:
Dear Pat,

I completely understand how you feel and I back you up 100%.  I also cannot wait for their to be a cure for this disease because the worry that we live with every day is very stressful.  Thank you for all of your efforts that will benefit all of us one day. 

Sharmin 

Zaini:
Hi Pat,

 :welcome2

It's good to see you posting here,people like you are an inspiration to us all,we are proud of you,every one of us is waiting for a final cure,we do say that thalassemia is a manageable disorder,but sometimes it hurts to see our little kids managing so much when they are so young themselves,of course you can understand it better.

 :thankyou and  :goodluck

Zaini.

InGreece:
Pat,

Your commitment and passion has helped us cope with this situation. These are our children and there is nothing more precious for all of us.
When things were the darkest, your work offered us hope, a possible light at the end of the tunnel.

Know that our prayers are with you and your work.

It's great to have you post here.

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