Help create awareness about Moyamoya syndrome with your vote....

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Vagabond

Vagabond

Herald
Pasting on behalf of my friend - whose nephew (staying in US) has the disease.

Please take out a minute from your busy schedule.

- Thanks

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Dear All,

My nephew is suffering from Moyamoya syndrome.

The disease is so rare that it is only known to occur in 1 in 2 million people..

We are approaching the World Health Organization (WHO) with the petition for May 6th to be officially declared/recognized as "World Moyamoya Day"!!!!

WHO came back to us, saying this disease is not a mainstream disease and would not recognize the same. In an effort to generate support for World Moyamoya day, we have started a petition online.. Please help support raise awareness by signing the petition


http://www.thepetitionsite.com/831/455/587/moyamoya-disease-awareness-world-moyamoya-day-may-6th/


Given that the disease is so rare, we are trying to spread the awareness of this fatal and progressive disease, so that, the future generation does not struggle for information as well as medical treatments like we and our families did.. It is so important for even doctors to be aware of this rare condition.

We are also trying to get in touch with soaps (television houses) in the US (House, medical documentaries etc) to see if they can have some episodes on Moyamoya. We have been partially successful and we will continue to reach out to various media houses for the same


Thank you so much for your time

God bless

Atul

P.S. Hope you don’t mind this email , which is for a good cause and so dear to my heart.. Please forgive if otherwise..

(please help spread the word to your families and friends)
 
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Nice gesture on your part. But you should probably change the title to something more specific like "Help create awareness about Moyamoya syndrome with your vote". Just to catch members' attention. Frankly when I read the title, I thought this is about something of a lighter nature.
 
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my younger sis in law has this , its terrible :| , right now shes a bit fine using blood thinners and the parents dont want to go for surgery because of theres no telling what happens after that
 
the only treatment is to operate on that part of brain, which is very tricky , even if the doctors are confident , the parents are scared thinking if something goes wrong , the consequences be even worse
 
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