1: Fri Jan 23, 2009 12:17pm Connie Lee
There was an article published in Nature Medicine online that you will be hearing a great deal about: http://www.nature.com/nm/journal/vaop/ncurrent/abs/nm.1911.html
In the article, researchers at the University of Utah have suggested that statins like Zocor, Lipitor, etc. may be useful in the treatment of CCM, both to reduce hemorrhage and to discourage the development of additional lesions. As I wrote in the newsletter, there are several cautions you should keep in mind:
1. The drugs have only been tried for treatment of CCM in genetically engineered mice. There are significant differences between mice and humans. It's not yet known whether they will be effective in humans. Anyone taking them to treat CCM at this point should be under the supervision of the researcher, Dr. Kevin Whitehead, who is first author on the article.
2. They would like to enroll individuals in a pilot study to determine whether these medications are indeed effective, so we need potential pilot study enrollees to stay off the medicine until they are enrolled.
The researchers are looking for 50-100 people known to have the hereditary form of CCM for the study. This doesn't mean the medication won't be useful to those with the sporadic form; they are just looking for folks who have multiple lesions for these early tests. Preferably, they would like individuals who have a relatively active form of the illness - have had multiple hemorrhages or have developed additional lesions. They have not decided whether they will be enrolling children, but they know that they must limit the study to US residents.
If you are interested in participating, please contact either Kevin Whitehead from the University of Utah at firstname.lastname@example.org
or me at info@AngiomaAlliance.org
If you live in New Mexico, please contact Dr. Leslie Morrison at email@example.com
Dr. Whitehead will be a presenter at the family conference in April. He will be discussing the pilot study as well as the other implications of his findings - what the research is showing in terms of what may be causing CCM hemorrhage. I hope you can join us there.
Thanks for all of your help!