[Engaged] Angioma Alliance

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  • Ryumon
    • Apr 2007
    • 1706

    [Engaged] Angioma Alliance

    Allow me to present a charity which is very dear to me. Angioma Alliance helps people with cavernous angiomas (or cavernous malformations, or cavernomas), which are vascular malformations of the brain and spine. I have one. I learned about it in the summer of 2005 when I had a brain hemmhorage in my brainstem. I have had a number of smaller bleeds over the years, and don't work full time because of some deficits that I have. It will never go away, and in my case is inoperable (neurosurgeons talk of "eloquent" tissue, the stuff they can't cut, and the brainstem is eloquent).

    Cavernous angiomas affect about 1 in 200 people, though approximately 1 in 20,000 are diagnosed as having this condition. Most people go through their lives with no symptoms, though others will have brain hemmhorage with related symptoms, or may have seizures or migraines. It seems that a lot of people have symptoms which are misdiagnosed, and never find out that they have this condition.

    There is no cure for cavernous angioma, and no medication that helps in any way. (On the contrary, there is medication that is harmful, anything that's a blood thinner; this increases the risk of bleeds.) However, in recent years, since Connie Lee created Angioma Alliance (which she did because her daughter is afflicted by this condition), researchers have gotten together and some recent studies have given promising hope for at least a drug that could help prevent bleeds.

    I volunteer for Angioma Alliance, working on their website, running their forum, and laying out their newsletter. When I was first diagnosed, I found a wealth of information on their website, and felt that I should give back some of my time.

    If anyone is looking for a charity to donate to, Angioma Alliance is a good example of a grass-roots charity that lives almost entirely from individual donations. It works on an orphan disease, one that is ignored by the drug companies, yet one that has motivated a number of researchers around the world.

    Enough from me. If you feel that you would like to donate something to Angioma Alliance, please visit their website: http://www.angiomaalliance.org/

    Thank you.
    Ryūmon (Kirk)


    I know nothing.
  • Dosho
    • Jun 2008
    • 5784

    Re: Angioma Alliance

    No Kirk, thank you.