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

Lara~    :

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

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

Hi all ; 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