Discussion Forums > Working Towards a Cure
Why Not????!!!!!
Sharmin:
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
Andy Battaglia:
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.
nice friend:
--- Quote ---The effort needs some garam masala
--- End quote ---
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 :thumbsup ...
Sharmin:
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
Andy Battaglia:
What if I email Pat Girondi and feel him out about Oprah?
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version