One thing you can never have enough of is support. I don't care who you are, or what you're dealing with. It's invaluable. And the best part of technology is that it opens up the world to you, esp when it comes to others facing the same issues you are dealing with...
Check out the new Facebook page Angioma Alliance for parents and children.
Thursday, March 1, 2012
Sunday, January 22, 2012
Road Trip!
If you've been reading the Angioma Alliance website/blog and newsletters, you know there was a big change this year. Connie Lee, the Alliance founder and President has transitioned to the role of Ambassador/Founder and a Program Coordinator position.
What does this mean? Well, what I'm most excited about is that she and her twelve year old daughter Julia are launching a six-month road trip on January 21st to raise awareness of the disease and encourage enrollment in the Patient Registry.
They're going to be heading to Boston come August. Holding my breath we'll get to meet up with them...ironically enough, we're supposed to be heading down south that month...ARGH.
Meanwhile. Check out the registry and tissue bank here. Watch the road trip adventures here. And get the itinerary here.
Wednesday, January 11, 2012
Resolutions
Yeah, yeah, I know.
I like to keep mine simple and attainable. Like I will eat x amt of donuts this year.
Looking for some ideas of your own? Then check out this brilliant blog post Thirty Things To Stop Doing To Yourself.
Gotta say I love the last one. Stop being ungrateful. Nice.
Sunday, January 1, 2012
Thursday, December 29, 2011
Charity Now
Yes! It's that time again.
You know, the time when I get the chance to say thank you to you, my readers, because it's entirely your doing that I got to once again donate my royalties to a charity.
How I love seeing those payments come in. Oh, yes, I do. Because it means we're making a difference together. However big or small, we're doing it.
It's just too sweet to give back when you can, and when I started this whole writing thing I swore that I made any $$$ it would go to a charity directly involved in making Angiomas a tad less suckworthy.
Um, they're still suckworthy. Don't get me wrong. But hey, like I always say--these donations aren't a lot but they're still something which is actually quite something.
Right? So. It's something.
Anyway, as always, this doesn't mean the job is done. Oh, no. So, just a reminder, this blog is offered on subscription on Amazon, and meanwhile -- it's the end of the year and those charities would reallyyyyyyy love your direct donation as well. Plus, it's a great way to get back at the IRS. Just saying. Something to think about as we creep closer to 2012...
Xoxoxo
You know, the time when I get the chance to say thank you to you, my readers, because it's entirely your doing that I got to once again donate my royalties to a charity.
How I love seeing those payments come in. Oh, yes, I do. Because it means we're making a difference together. However big or small, we're doing it.
It's just too sweet to give back when you can, and when I started this whole writing thing I swore that I made any $$$ it would go to a charity directly involved in making Angiomas a tad less suckworthy.
Um, they're still suckworthy. Don't get me wrong. But hey, like I always say--these donations aren't a lot but they're still something which is actually quite something.
Right? So. It's something.
Anyway, as always, this doesn't mean the job is done. Oh, no. So, just a reminder, this blog is offered on subscription on Amazon, and meanwhile -- it's the end of the year and those charities would reallyyyyyyy love your direct donation as well. Plus, it's a great way to get back at the IRS. Just saying. Something to think about as we creep closer to 2012...
Xoxoxo
Sunday, December 25, 2011
Tuesday, December 20, 2011
Monday, December 12, 2011
Thursday, December 8, 2011
Angioma Alliance Winter 2011 Newsletter
The Angioma Alliance winter newsletter is available! Go here and get yours.
Tuesday, November 29, 2011
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.
Thursday, November 24, 2011
Saturday, November 19, 2011
2011 Angioma Alliance Pathobiology of Cerebral Cavernous Malformations Scientific Workshop
Thursday, November 17, 2011
Live Blogging from Scientific Workshop
Tuesday, November 15, 2011
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
- David A. McDonald, BSc;
- Changbin Shi, MD;
- Robert Shenkar, PhD;
- Rebecca A. Stockton, PhD;
- Feifei Liu, MSc;
- Mark H. Ginsberg, MD;
- Douglas A. Marchuk, PhD;
- Issam A. Awad, MD
- 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.
Tuesday, November 1, 2011
Action Groups
The Angioma Alliance blog posted recently about needing feedback and support regarding action groups. An excerpt:
It's an interesting post, and an even more interesting concept. I hope you check it out.
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.
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.
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