Give the gift of hope

This holiday season. Bring us all one step closer.


Join the International Cavernous Angioma Patient Registry and DNA/Tissue bank if you haven't already.

Happy Turkey Day!

2011 Angioma Alliance Pathobiology of Cerebral Cavernous Malformations Scientific Workshop

I hope you've been following Connie Lee's live blogging from France. (If not, go here.) Make sure you check out her final take away message from the Workshop here as well.

 “Without you, there can be no cure”...

Her words are poignant, and necessary. 

Live Blogging from Scientific Workshop

Join Conne Lee on the Angioma Alliance blog as she live posts from the three day 2011 Angioma Alliance Pathobiology of Cerebral Cavernous Malformations Scientific Workshop in France. 


Her intro is here and Day One is here and here. 


Day Two.


Day Three.


You don't want to miss it!

Fasudil Drug Study

Results of a new study were recently released regarding Fasudil and CCMs in mice.  Used in Japan, Fasudil is a drug used to treat brain aneurysm patients. While not currently approved for use in the United States, the genetically-modified mice treated with Fasudil in the study had fewer and smaller lesions than those who received the placebo. 


This is something to watch...


Check out the press release here. 


Check out the article published October 27, 2011 online at Stroke here. It will be available in the January '12 print issue as well.


Article: 

Fasudil Decreases Lesion Burden in a Murine Model of Cerebral Cavernous Malformation Disease

1. David A. McDonald, BSc; 
2. Changbin Shi, MD; 
3. Robert Shenkar, PhD;
4. Rebecca A. Stockton, PhD; 
5. Feifei Liu, MSc; 
6. Mark H. Ginsberg, MD;
7. Douglas A. Marchuk, PhD; 
8. Issam A. Awad, MD

1. From the Molecular Genetics and Microbiology Department (D.A. McDonald, D.A. Marchuk), Duke University Medical Center, Durham, NC; the University of Chicago Medical Center (C.S., R.S., F.L., I.A.A.), Biological Sciences Division, University of Chicago, Chicago, IL; and the Department of Medicine (R.A.S., M.H.G.), University of California, San Diego, San Diego, CA.

Action Groups

The Angioma Alliance blog posted recently about needing feedback and support regarding action groups. An excerpt:

Angioma Alliance helps us to set aside our differences to work together toward common goals: seeking a cure, finding peer support, answering research questions and helping each other to live full lives. The Board of Directors fully supports this solidarity and believes that we are stronger when we are together with our shared diagnosis of cavernous angiomas. However, we also think that there is a place for creating more specific groups, within the greater Angioma Alliance, for those who have particular concerns and interests. In this way, the organization can meet the needs of all our members in ways that serve each person best.

At this time, we are excited to see what groups may want to form and become what we are calling Action Group. As examples, the groups could focus on a particular problem, such as brainstem lesions, or a location, such as New Mexico.

It's an interesting post, and an even more interesting concept. I hope you check it out.