Thursday, May 31, 2012

Angioma Alliance Zombie 5k Run for Research

I'm so dying to go to this.


Pun totally intended.

And shouldn't that be Shuffle for Brain...Research?

And here I was suffering thru zombie withdrawal, waiting for the Walking Dead to resume.

It looks like sign-ups/tickets for this themed fun charity run go on sale June 1, 2102. Check out the Facebook page here and event page here:

The zombies will rise on October 20, 2012! Be sure to register starting June 1st for our Zombie 5K Run for Research. We will be hosting our event in the Kensington Metro Parks of Milford, MI. 

Btw. If anyone goes. Photos. I'll want some. 

Sunday, May 27, 2012

Family Conference in Canada!

Wish I was going.

I've been wanting to go to Canada since oh, forever. Besides, my friend Gillian is there. So it has to rock.

For more info or to register, check it out here:

Angioma Alliance Canada Family Conference

Saturday June 6, 2012

McMaster University in Hamilton, Ontario

Thursday, May 24, 2012

One Foot in Front of the Other...

Some people are happy. Some aren't.

Some want to be even happier. Some are too happy.

Some think it's easy. Some think it's static. Some think it's earned. Some think it's elusive and find others who possess it annoying. And some who possess it are annoyed by those who are annoyed by them possessing it.

That's life, I suppose.

Personally, I've always believed in the hedonic treadmill theory. Or when I say believed, I mean when I first read about it, something clicked inside me. Yes, I thought, that's how it is for me.

Good things have happened to me. Bad things have happened to me. Very good things have happened to me. Very bad things have happened to me. My happiness has gone up and it's gone down, but never that far, and never that high. I always go back to pretty much where I was before.

And I'm not complaining. I think my before is a pretty happy place.

(Twenty bucks someone gets annoyed at that...)

But what most clicked was the idea that I didn't have to take blame or responsibility for it. Because sometimes people try and make you feel bad for feeling bad, or for feeling good, or for just feeling how you damn well feel. Do something to fix it, they seem to be saying.

Can't, says the hedonic treadmill theory. It would be pointless. I am the way I am, and you should accept me the way I am, because I do. And I kind of like that.

But then it's just a theory, and it could be completely full of crap. Still doesn't mean I don't kind of like it.

Anyway, you tell me: is your happiness a treadmill ride, or no?

Wednesday, May 23, 2012

New Partnership

Angioma Alliance has partnered with the Maryland Brain and Tissue Bank.  Thanks to this, brain donation at the end of one's life for cavernous angioma research will now be possible. 

From the Alliance website: To learn more about this program and how to enroll, please contact Amy Akers by email at

Sunday, May 20, 2012

Research News

From the Angioma Alliance 2012 Spring newsletter:

Sporadic CCM: An Italian research group published a
study about the genetics of sporadic CCM. Sporadic CCM
is not caused by mutations in any of the CCM genes;
however, this group identified specific genetic variants that
are more likely to be found in people with sporadic CCM
than in the general population. (PMID: 22378217)

Conservative Management of CCM: Scottish
researcher and Angioma Alliance Scientific Advisory Board
member Rustam Al-Shahi Salman studied the untreated
clinical course of cerebral cavernous malformations. This
study looked at 139 individuals with at least one CCM who
did not undergo surgical treatment. The findings show that
within 5 years of experiencing a hemorrhage or
neurological symptom, the risk of experiencing a recurrent
symptom is higher than the risk of the initial
symptom. However, after 5 years, the risk of experiencing
additional symptoms begins to decline. (PMID: 22297119)

CCM3: While studying the function of the CCM3
protein, researchers in Spain identified that it plays an
important role in protecting cells from damage caused by
reactive oxygen species. Reactive oxygen species can
damage cells and may have a role in other common
diseases like heart disease and cancer. These molecules are
also neutralized by antioxidants; compounds found in
many foods including fruits and vegetables. (PMID: 

To read more about these studies, please use the search engine and search for these papers by
their PMID number listed above

Tuesday, May 15, 2012

Where's the good in all this, someone asked...

I don't know.

Maybe there isn't any upside to dealing with this all.

I mean, I'm not an expert on this. I don't even have CCMs. I'm just the mom.

But I had a guest today. A visitor. An intake worker, from the regional agency, who wanted to know every detail of our lives. Every. Single. One.

BBB is turning 21 soon, and he'll be transferring to adult services. This is all part of how this bureaucratic crap rolls, apparently.


The thing is, we laughed. A lot. She was hilarious. A tiny, wisp of a woman, she had a wicked sense of humor and a bit of a trucker mouth. That makes her my favorite kind of person.

"I'm sorry to hear about your struggles," she finally said.

"Why," I asked. "Look, if this hadn't happened, I would have been a horrible person. Dealing with this stuff, it changes you. It tempers you. How can you be sorry about that?"

That's when she confided she had a heart condition. Her parents had been told she'd never survive to see her first birthday.


"I'm better for it, too," she said. "I help people, with my job and life. I have a purpose now. But more important, I know how damn beautiful life can be."

And I wouldn't have met her. I wouldn't have had this afternoon if this hadn't happened in our lives. And that's beautiful too.

I wouldn't have met my son's doctors or case manager or teachers, or so many of our friends. I wouldn't have gotten the chance to spend a weekend last winter learning how to snowmobile with Marie at Easter Seals, and I wouldn't have dared to stand in the middle of a frozen lake, listening to the ice cracking beneath my feet. And I wouldn't have appreciated how magical that moment, and life, was.

Because of this, so many people have come into my life, into my child's life, into my family's lives.

Because of this, I went back to my passion: writing. I built a new career, I signed with agents, I published books. I tried to make a difference, even if it was to entertain someone for a few hours.

Because of this, I picked a man, a good man, a man who stands beside me and fights with me, to marry that I might never have been smart enough to pick before.

Yeah, but where's the positive in all this, someone asked the other day.

Everywhere, I wanted to say. It's bizarre to think there's not some good that's come from all this. And I've been thinking about it a lot since.

Doesn't mean I wouldn't take it back, my son's diagnosis. Doesn't mean I wouldn't wave a magic wand and make my child healthy and whole. In a heartbeat, I would.

But I can't. And make no mistake: I don't believe for one second there's good inherent in any this. No. It doesn't work that way. There's no automatic positive side, no gift just plopped there when something awful happens to you.

It's up to you to give it meaning, though. It's up to you to decide to find the good and the purpose and allow it to change you. It's all up to you.

So, where's the good in all this? I still don't know. I'm just the mom, for pete's sake. But what I do know, all I know, is that I think you can find it. You just have to see it.


Lee's going to jump. June 16th. He needs you to help. $$ raised goes to Cavernoma Alliance UK.

Better Lee than me. *gulp*

Check it out here!

Clinical Study for Statin Drugs

The first clinical study on statins in patients is getting underway at the University of New Mexico. To learn more, esp about participating go to

Also, maybe check out:

See more here for past info on statin research and check out the sidebar right over there...-->. Yep. Right there. 

Thursday, May 10, 2012