Why Not????!!!!!

Dear friends,

Let's take some time to outline our goals and what methodology we plan to utilize.

Efforts have been made in the past, but they have not been successful.  What do we plan to do that will be more effective than previous efforts which will make our efforts a success.  We need to have a very positive approach to this. 

For example, if our goal is to support Errant Gene's gene therapy trials, we can send multiple requests to Oprah from different members of our group outlining their experience with the disease, the potential benefit of this research, (thalassemia is a single gene defect, a gene therapy cure would lead to a complete cure and normal life for the patient), and we can suggest a possible plan for her - such as discussing thalassemia on her show, in order to bring awareness to the disease, possibly prevent more cases from arriving, and encouraging people to donate to thalassemia charities, also (if Errant gene's is not able to accept funding directly) - perhaps Oprah can purchase a CD for every member of her audience, and request that her televised audience go online and purchase a CD.   

If we can come up with ideas with a complete goal and method we can then tailor our emails and articles to that approach. 

I am excited to hear your ideas. 

Sharmin

Pat Girondi who is the founder of Errant Gene, is a musician based in the Chicago area. Perhaps there is some way to tie this in to connect with Oprah. Without some way of grabbing the attention of the right people, letters will be mostly ignored. The effort needs some garam masala, as the speaker at the Pune conference pointed out. Thal needs some "spice" to draw attention. In this case, marketing may be far more important than medical. Shilpa and Ashish had the Oprah idea years ago and I believe Thalassemics India made some effort but nothing came of it, but we need to find some way to get attention or our efforts will be unrewarded.

Donations should be made to Errant Gene or through Pat Girondi if you want to support Dr Sadelain's work. He works through Sloan Kettering in New York, but the only way to ensure donations go to research into gene therapy is to donate to Errant Gene, or buy shares in the company.

To learn more about Pat Girondi go to http://www.myspace.com/patgirondi
All proceeds from sales of his CDs go to Errant Gene. Pat has an 18 year old son with thal so please be assured he is in this as much as anyone and for the right reasons.

The effort needs some garam masala

Hummm ...... Andy you used the right word .. after attending few confernces in south asia you learned to speak Hindi/Urdu as welll ....  isn't it great ... super ,, aik dum Super ...

Andy,

Thank you for the guidance.  I hope that you are accomplishing the work you need to get done and that your employee is doing well with the stem cell transplant. 

Manal,

I am so glad that you have come up with this idea, we have the potential to do something good with this.  It is good to know that Pal Girondi is located so close to Oprah, Pat Girondi's musical talents will also be helpful to us in getting Oprah's attention.  I know that if we go to him with a firm and coherent plan he will be sure to support us.  Manal, if it is okay with you - then you and I can begin drafting a plan - and then we can post it here.  We are both busy moms so please be patient with us...... and please continue to give us your great ideas!!


Sharmin

What if I email Pat Girondi and feel him out about Oprah?

Sharmin , i was just typing the same thing , i think this is brilliant. Definetly she will hear from him more than us ( Is he a well known musican in all the States, excuse my ignorance)

manal

Andy,
That would be great thank you   I have also been in touch with him during the last few years - he is so kind to other parents of thal children.  But it would be even better if you could talk to him:)

Manal, I think that his music is great - it has a nice jazzy quality to it.  Let's see what happens.   Certainly, doing anything is a little more difficult for the members of this group because we are located so far apart, different time zones and no chance of discussing this over coffee    The good thing is that we have a global perspective on thalassemia and that will emphasize the importance of understanding and curing the disease, to the people we are hoping to reach. 

Sharmin 

A short update on my part time worker's stem cell transplant this week. Early in the week he had chemotherapy and full-body radiation. His wife said his skin looked sunburned from the radiation. On Wednesday he had the stem cell infusion through his central line. So far, everything is under control. If this works, he may eventually feel better than he ever has. In addition to curing the lymphoma, this will also cure his thal minor which has caused problems for him since early childhood. His blood type will also change.

Hi Andy ,
i wish that your employee will recover soon .. please convey my regards to him , if it is possible ..

Take CAre of your self as well, and take proper rest , you are realy prescious gift for us ...
Umair

Andy, i really wish him a healthy and speedy recovery

manal

Manal.

I only read your first post: Good Idea.
I sometimes get so angry that they care about everything, but thal and other blood diseases.

Andy, good plan.
I hope his stem cell transplant will be succesful!!! (Y)

Andy,

I am glad to know that things are going well so far.  All the best to you, in having a healthy friend and worker back soon - and to your employee and his family.  I wonder how he will feel, not being thal minor anymore, it will be nice. 

Best,

Sharmin

Thanks Dore 

manal

Thal pals,

I think that ultimately we all want a cure, and now the cure is within reach.  We need to have people support Thalagen in finding a way to fine tune that cure so that it can work for us.  Each day that this is delayed is another day that we have to live with thalassemia.  Yes, we need to raise awareness for this and convince others to donate.  I will do what it takes to get the word out. 

We can all begin by donating ourselves, after all this cause means more to us than anyone else.  The only way we can convince others to donate is if we and our friends and family donate.  Even a dollar from each of us and our family and friends will make a difference.  If we all put our heads together we can make the difference.  If we each can't put in a dollar, how can we convince someone else - who has no emotional connection to this disease to offer large sums of money toward this cause? 

Come on guys, whatever we can spare lets help Pat cure our children!!!! 

http://www.thalassemiapatientsandfriends.com/index.php?topic=1115.0

Sharmin