Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: Manal on October 19, 2008, 01:46:15 AM
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I just did a crazy thing, i wrote an email to Bill Gates explaining to him what is thal and how there are common grounds between thal and malaria ( since he is donating every year for finding a cure for malaria) and how there are trails that are close to find a cure but they just needs funds to cure a very harsh disease that is widley spread but globaly not known. I mentioned Andy,some statistics, Dr. Sadaline, and how his trails are formal and each step is approved by FDA and asked him to help in funding especially that $3000000 are not a big amount for him.
I know that this person has a staff to see these mails and even i read that many years ago, it is recorded that he receives 4 million mails daily but i thought it wouldn't hurt any way, why not may be luck plays a role here.
I was thinking of why shouldn't we send emails to all people who might donate explaining our cause. It annoys me a lot as i was discussing this with Andy in Singapore seeing rich people spending millions and millions on luxurious staff and only $3000000 are difficult to donate for a noble cause. What do you think about this, do you think that it could lead to anything. I thought we spend part of our time writing online so we might address people to donate.
I searched the net for his email and there was not a special one and definetly the one he personally sees is not availabel but i just sent the email on all possible emails that i found.
If you agree we do so, do you think of a certain way this letter should be written with or an informal one from a mother like the one i just did ( but from my opinion it lacked formal infromation about Dr. Sadalin, where he is, address, ...)
Let me know your feedback on this
manal
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Manal,
What a great idea!! Attempts like this are sure to make the difference! I wish we were all located in closer proximity to one another so that we could attempt to put on some other types of fundraisers too!
I hope Mr. Gates receives your email and decides to contribute to this cause. What a difference he could make! Not only that, it would encourage other rich people to donate to our cause too!
This reminds me of Pat Girondi and what he is attempting to do. If we all try we are sure to make a difference.
Way to go Manal :thumbup
Sharmin
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Manal,
That was a great effort on your part,we have to do what ever we can do,not necessary that we'll get desired results,but still we have to fullfill our role,and who can be better for this then a mom to a thal child,what we go through on daily basis,only we know,so we'll do every thing we can do to help the cause.
Way to go :bighug
Zaini.
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Brilliant Manal. Really awesome.
I am sure you will get a reply on this. I think you need to move this post from here and make it like an idea's or something like that, in which we can come up with idea's to come up with funding and also where it has to be channeled.
ALso one thing which we need to get in is the Global burden of Diseases, where all these big donation camps can also look for the research funding for all the related genetic blood disorders or thalassemia.
What do u think?
Puja
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Thanks my friends for your encourgement and replies.
Puja
I totally agree with but actually don't know how or what is the procedure of putting thal on the Global burden of Diseases, may be Andy can help in this.
What i am really doing is trying to find e-mails of famous people in the media, like Oprah, editor in chiefs of famous publications but the problem is that the emails you find are not personal, they are just what you find on sites and either they don't reach them or they are read by others but as i said before no harm from sending.
manal
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Manal,
You just gave me a wonderful idea. Perhaps we can write an article for a magazine regarding the challenges that thals face.
Sharmin
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Hello,
this is really great thing Manal, we must appreciate you for this.
Sharmin that's great idea to write an article on thala, I thouht that so, but i didn't..
we have to start from somewhere, doesn't matter we get response or not (i believe we will surely get)
but atleast we are trying that's matter..
Really frns you are so kind and I'm Lucky that i have you..after talking to you i feel so relax
thanx
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Thanks dear anie :hugfriend :hugfriend
Sharmin, that is great but how can we do this, i mean what is the access. Locally in my country, some articles were written but no known feedback. We have high illetracy and one article is actually not enough. I too have an observation that people don't act as long as they don't suffer from the disease.
What about the case in Canda and US, is it easy for someone to send articles??
manal
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How about I write to MS Shobha Tuli Vice President of TIF. What do you think ???? Will it help.
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:rotfl HAHA
Manal you're not crazzy , do You know why I dont think that you are crazzy???
Because I wrote the same thing to Oprah's show once , but they didnt replay it's been a year :-\ hmmmmm
7atko0n fekra hayla , It would be a great Idea If we grabed some of those people's attention I mean the world knows about Cancer, Diabetes etc ... but tell them you have thalassemia major and all the sudden they'll have a blank look on their face and they'll be like ??? WHAT'S THAT???
any way great effort and we'll keep trying
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Puja, though i know that TIF are supposed to know that we need to be heard and that is not something new to them but i encourge you to do so.
Maryoom, thanks dear for your encourgement , we always have to try our best
manal
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Hi! Manal ! It's brilliant what you did I mean surely mr. Bill Gates would come to realize how important the cause is for us patients and the parents who have an offspring with the disorder , let's just cross our finger that may he respond to it soon.......... :wink
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Another thing which we can do is may be draft a mailer and do the votes that it should get into GBD (global Burden of diseases). WE need to work together for this will all world wide communities of thal and societies, get online votes and actually send it to people in charge.
U know what - there are companies who actual pay money as well for patients( you must have got those forwards like my child is sick and this comapny has promised to pay 5 cents per email so please forward it to 10 people or 20 people ). Therefore some amount of money can be generated even while forwarding this mailer, but obviously not as much as how we can get out people like Bill Gates and OPrah.
What do u think this Voting mail will work? Shall we give it a shot.
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Hi Manal,
That is great news, actually i did write to the bill gates foundation also about a month ago and the response i got was that their oganisation is looking that curing other problems in Africa so there was not really any joy there but i have written a letter which i plan to send out to various large businesses and i was even thinking of someone like Jamie Oliver.
If i can get him on board - he maybe able to help in the sense of cooking and diet for thal people and somehow reaching media, television - its worth a try
What do you think?
Shy
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Puja and Shy
I think that all these ideas are great and we should divide ourselves into groups and START. Each group can work in one of these ideas and ask for help from the others if needed.
For example what i am working on these coming days are finding emails of those important people and sending them. Puja, i like this idea of voting you can start on it and see what you need to put in action and we can work in groups, same thing goes with Shy. So any one who has any good idea to help in global awarness of us and fundraisng, please post what you will need or your plan for achieving this goal and we can arrange it in terms of who can do what, cause we need to start. My idea is that locally we concentrate on awarness of the disease and globally we concentrate on fund raising for a cure. Hope i am making sense.
Thanks Lyanne for your wishes, i pray for this too
manal
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Manal,
I am thinking about working on the magazine article....as for my writing skills hmmmm - maybe I'll need someone to help me out there!
Sharmin
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Someone like Oprah and her promotors are likely to pay attention to something if it is brought to their attention repeatedly.
We have over 1300 members, if each of us took some time to contact her she is much more likely to see this as a valid issue and she is more likely to air on tv or discuss it on her show. People like Oprah will also be more likely to donate to charities if they are brought to attention more.
Can you imagine the random causes that these people must receive letters for? We need to select certain people - like Oprah - and then hundreds of people need to send her letters - that is more likely to get her attention. While we are at it lets hit up Dr. Phil too...
I have thought more about submitting a magazine article too. Perhaps it can feature a few cases - and we have some terrific contacts who can offer medical excerpts to the article. We should also involve Pat Girondi as it may help his efforts too. I will try brainstorming a little more today to see what else we can do.
You are all doing a great job - let's keep generating ideas!! :thumbs
Sharmin
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Shy this is AN AMAZING IDEA thals do need a special diet I realized one i ate pasta for a whole month my Iron levels became a little lower,,,
Sharman yap Oprah but she didnt reply :-\ I think that we should all send a letter maybe then we would get her attention :wink Dr.Phil no I dont think he'd actually care... he's more into family problems and child sopurt.
Manal yes the small step is to aware people locally and here in Kuwait we already did by news papers and found raising even ART competitions and stuff
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ok Manal
I will discuss the voting scene with a few people and Andy then draft a mailer. I think we can get this rolling.
Lets pray for the best.
Luv
Puja
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Okay that is great so to assign our errands
1- Sharmin will prepare the article for the magazine
2- Puja will take care of the voting
3- Shy is working on letters for business companies
4- Me, will prepare an email that will be sent to all possible people according to the availability of there address and emails
PS. After writing my email, i will need to post here because i need your agreement on the content and will need your help in correcting any sentence structure or any thing you find that should be changed ( excuse me as i feel this is better especially that English is my native language and we need to make all the members send it to the same address so that the receiver feels that there is a ''number '' of people who are in need for recognition)
I hope i will finish it in a couple of days and i will keep updatig you.
Please if there are any other ideas, lets discuss them
Love you all
manal
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Sounds good Manal:)
Sharmin
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You guys are doing a great job :thumbs anything i can do to help? the dumb one ? :wink
Zaini.
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ok gr8, I will liase with all the woldwide communities associated with thal for the votes. There is one thing which I find difficult though when we are forwarding it again and again you know there is a cursor mark(>>>>>) which keeps on adding, do you understand what i mean. This makes the mail very un attractive. is there a way to work around it.
Manal - i read your cancer forward, thanks for that. However one problem when we receive this kind of valuable advice then also people tend to delete even before reading. Sharmin /Manal, we should all come up with something very simple but catchy. Also Manal your idea is a good idea to get a lot of advice from our friends here for the mail. I will use your mail as well to all the people as an introduction and ask for votes.
I request all thal pals here to give us more ideas on how to get across straight to the point and how to make it so catchy that people donot delete it.
Also can someone advise me here, in terms of talking to the comapnies who pay 5 cents per forward( I 've heard), which comapnies can we target.
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Also Guys, is it too late to write to Barack Obama. No harm in sending a mail? What do you think thalpal's in US ????????
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Dear thal pals,
My understanding is that this effort is toward increasing awareness - and the encouraging these people to donate funds to existing thalassemia charities. In my article I hope to list some charities that people can donate to including encouraging people to purchase Pat Girondi's CDs toward the Errant Gene gene therapy trials. Also, contributions to charities geared toward helping thal/ sickle cell patients abroad.
Let's make sure that what we have a proper and sound framework for doing any such thing before getting started, we don't want to break any rules. We need to find out what the rules are first.
Talk to you all soon,
Sharmin
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Also can someone advise me here, in terms of talking to the comapnies who pay 5 cents per forward( I 've heard), which comapnies can we target.
This is a pure spam thing. there is no company that gives out 5 cents for mail forwards. Please do not think those are real stories.
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Puja,
I know what you mean by the (>>>>) but actually i don't know how to fix them.
Sharmin,
When i first sent my mail, i meant to donate the money for the gene therapy group led by Dr. Michael Sadaline and the problem i had was that i didn't know the contacts of the doctor or under which organization and i am not sure whether Dr. Sadaline group is the Thalagen or not. Andy please advice on this and if you have their address where they can receive donations please post it..
However working on thal organizations sounds good too.
I think we need to have a list of contacts( address, emails ...) of places that receive donation to include in the magazine articles or forwarded emails. I mean when we send emails to famous people for example we should include the address where they will send their donation .
Zaini, i think you can help in finding those address or mails of important people if you can
Narendra, thanks i didn't know that these companies don't exist
One more thing:
What should be written that makes the receiver believe that mails are not a spam and that we have a real cause. I say this because i am sure that many of us had received a lot of mails asking for donations, money and so...
Andy, Does Dr. Sadaline had a formal bank account that receives these donation so who ever want to donate feels that everything is official
manal
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Sharni, yes we really need to start sending out things only after we have all internally discusses and approved. Right frame work is really important. lets stream line this work properly.
1.We are working towards 2 causes here, first to donate money to the research team which is working for a cure for gene therapy which will cure thalassemia. WE need to identify exactly whos is doing what for the research of thal. So that when we talk to people we are talking facts.
2. Secondly to get thalassemia in GBD so that people like Oprah and Gates foundation know about thalassemia and donations can be expected. Our voting email will describe what is thalassmeia and how each married couple should be tested and if there is one carrier, they shoudl go in for DNA to rule out silent carrier(easiser said than done, costs are high in countries where it is not done in Govt hospitals). Our voting email will ask thalassemia to be included in Global burden of should gather votes in getting thalassemia in the Global Burden of Diseases. For this I plan to contact all the members of thal registeries world wide and all communities related to thal to gather votes.
Narendra - if those type of emails are spams then y they are sent on the first place??????wht good it does to anybody in forwarding it across to million people. U understand technology better than me, so please advise.
Also Narendra can you please advise me how to work around this >>>>>>>>>>>> problem. Can we do something?
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Hi ,
WE have to tell those people that, they have to think about thalassemia and its cure before it become as GBD ... and for the e-mails aadresses tell me the name of the persons you need their E-mails i will try my best to track their e-mail adresses .. i want to try once .. soo i m always there to help ...
i think we have to make some moves in our friends and family as well by starting forward mails about thalassemia , it will help people to understand thalasemia and to respond in better way they can ...
take care
Umair
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Narendra - if those type of emails are spams then y they are sent on the first place???wht good it does to anybody in forwarding it across to million people
Here are few things for your reference
From: http://www.hoax-slayer.com/krista-marie.html
Any email that tries to convince recipients that a donation, prize, or other benefit is somehow contingent upon how many times the message is forwarded is almost certainly a hoax.
From: http://www.breakthechain.org/exclusives/natalie.html
When you forward a chain letter, your e-mail address, and those of the people to which you send it, are attached to the message. Spammers and scammers often collect chain letters as a means to building their mailing lists. So, this message (and others like it) do no good and could actually do harm. That's reason enough for me to break this chain!
I think technology should be used for better purposes. Please do NOT forward such emails (Company X will donate this if this email is forwarded to 10 ppl or something bad will happen if they don't forward this email in next few days!!) to anyone. Unknowingly, we are wasting time - not only our's, but of our friends and families and giving our email id to some unknown person who might sell the email id for some money.
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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
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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.
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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 :thumbsup ...
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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
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What if I email Pat Girondi and feel him out about Oprah?
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Sharmin , i was just typing the same thing :rotfl :rotfl, 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
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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 :biggrin 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
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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.
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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
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dear ANDY,
i hope he recovers soon, interesting about changing the blood type tho :biggrin
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Andy, i really wish him a healthy and speedy recovery :getwell :getwell
manal
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Manal.
I only read your first post: Good Idea. :biggrin
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)
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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
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Thanks Dore :hugfriend
manal
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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
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And keep buying Pat Girondi's CDs. All proceeds go to fund these trials and this is something affordable that most can do.
I have met quite a few doctors at conferences over the past few years, and some like Drs Vichinsky, Wood and Piga are real heroes to me for both their amazing efforts and their genuine concern over the fate of patients, but one doctor has stood out more than any other because of the ultimate confidence he projects about his work. This doctor is Dr Michael Sadelain. Dr Sadelain is truly convinced that his work will lead to a new cure for thalassemia and his trials on animals have shown that the basis of his beliefs are strong. I believe that Dr Sadelain's work will bring us this cure and that the only thing holding him back if insufficient funding. Hopefully with a regime change in the US, we will be seeing more direction of tax dollars into medical research and development instead of creating such a monstrous war machine, but we also need private donors if we are to get this off the ground. Thalassemia affects people all around the globe so this does need to be an international effort. There is a lot of money flowing in the oil rich countries of the Mideast and these countries have a substantial thalassemia problem. Convincing the wealthy in these countries to become donors to the cause of finding a cure should be a priority. Many of these people have family members affected by thalassemia and we need to find a way to reach these people and convince them that the only thing holding back a cure is funding.
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Hi Andy,
This is a question I intended to ask you: how far has it gone? that is, where are we standing with gene therapy? You talked about Dr. Sadelain. Please tell us, how far has he gone with his work?
As for genetherapy funding, this is the role of TIF, isn't it? To search for financial resources in the Mideast or anywhere else. Of course, first of all, it should be a national goal, but where nations move slowly, individuals have to take action. That is not fair, but that's the way it is. But for TIF things are easier due to its contacts and its being an international federation.
Personally I do not think genetherapy is close enough, so keep going with means we have at hand.