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http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Moyamoya Related Topics >> Moyamoya Related Information and Support >> Good News Everyone!!!!!!!!!!!!!!!!!!!!!!! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1166116226 Message started by larab on Dec 14^th, 2006 at 12:10pm

Title: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by larab on Dec 14^th, 2006 at 12:10pm

Hi,
I just wanted to let everyone that I am in touch with the NORD that is National Orgamization for Rare Diseases. I couple of months ago there was already a fund set up to do research and at that time there was $1,270.00 in the fund and in order to get a grant there needed to be $35,000.00, well the newsletter I received yesterday said that that amt. was met and that a grant will be awarded to start research.

LaraB

Title: Re: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by mg12061 on Dec 14^th, 2006 at 12:14pm

Lara,That's awesome!!!! It's about time some research is done!Keep us posted.
Mary Grace

Title: Re: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by LA on Dec 17^th, 2006 at 6:42pm

Lara~ : :D :D :D :D :D

Good news on NORD research beginning.
Thanks for your rearch on it all.

How did NORD come by these funds? Were they donated privetly, or did NORD allot the money because "It's time to research mm"? Either way it's really good. What aspect of mm will NORD research?

I'm pretty excited about all this which is why I'm asking so many questions.

I suspect too that with Senator Johnstons AVM disease more research and awareness will be happening. I send love to his family.

This is really COOL!

Thanks for finding out about all this.

Love,
Linda :D

Title: Re: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by ladybugz on Dec 18^th, 2006 at 6:47pm

Is the Senator's disease similar to MM? I'm glad that we've got research going on out there.

Title: Re: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by LA on Dec 19^th, 2006 at 10:36pm

LaraB~

After reading your post and asking all sorts of obnoxious questions, I checked out NORD myself....WOW. NORD is really a great organization.
I feel 'at home' there with all the rare and odd diseases!!!!

$35,000. is a good grant!

Thanks for alerting us to this.
Linda

Title: Re: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by larab on Dec 28^th, 2006 at 12:50pm

Hi,
the money is given or donated. I do not know where the money came from [smiley=huh.gif] I am just glad that there is money there. I am not sure what kind of research they will be doing, I will try to find out :)

Title: Re: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by larab on Dec 29^th, 2006 at 12:08pm

Hi all ;;D I spoke with someone over at NORD and they told me that the donation was made from a person who has this disease and they must have done a fundraiser and the money they received gave to the fund for MM.

A BIG thank you whoever you are :D

Title: Re: Good News Everyone!!!!!!!!!!!!!!!!!!!!!!!
Post by LA on Dec 30^th, 2006 at 3:44pm

LaraB~ 8) :) :D :D

The gift to NORD from an mm person is incredibly generous and wondereful.

BIG HUGE THANKS to the person who made the donation and to all who supports mm research!!!!!

I notice that a lot of the realitys (research!) regarding mm comes from all of us on the Board sharing our expericences.
Spoke with a friend with a rare disease in her family and they have no-where to share/experience as we do. no family.
We are so lucky.

Thank you DJ and everyone who reads this board!!!!

Happy New Year.

Linda (LA)