Don't Forget!

From the Angioma Alliance blog:

Cavernous Angioma Conference in Santa Fe!

Please join us on Saturday, August 27th, 2011 to hear presentations by neurologist, radiologists, neurosurgeons, and affected individuals. The conference will be held from 10:00 AM to 2:00 PM at the Courtyard by Marriott Santa Fe, 3347 Cerrillos Road, Santa Fe, New Mexico. Call Beth with questions at 505-272-3194 or email babaca@salud.unm.edu.

Don't Forget!

Take part in http://www.macysinc.com/shopfo​racause/ August 27th!

You can purchase the tickets from Rachel Hart (RHart@AngiomaAlliance.org) for $5 through PayPal or check. They can be used for online shopping as well!

Macy's Shop For A Cause

www.macysinc.com

On Saturday, August 27, 2011, Macy’s will host its 6th annual Shop for a Cause benefiting charities nationwide. Since 2006, Shop for a Cause has raised more than $38 million for charities across the country. This is your opportunity to be part of the excitement.

Tell Your Story

Check. It. Out.:

To celebrate the publication of Life…The Reader’s Digest Version: Great Advice, Simply Put, Reader’s Digest will host the “Your Life…” contest. The grand prize winner will receive $25,000, and ten runner-ups will win $2,500. The eleven honorees’ stories will also be published on ReadersDigest.com.

In addition, Facebook fans will have the chance to vote for their favorite stories. The most popular Facebook entry will also receive $2,500. To enter, submit your life story in 150 words or less on Reader’s Digest‘s Facebook page. The deadline has been set for November 1st. Glee actress Jane Lynch submitted the first entry in the contest. 

Cavernous Angioma Conference in Santa FE

From the Angioma Alliance blog:

Please join us on Saturday, August 27th, 2011 to hear presentations by neurologist, radiologists, neurosurgeons, and affected individuals. The conference will be held from 10:00 AM to 2:00 PM at the Courtyard by Marriott Santa Fe, 3347 Cerrillos Road, Santa Fe, New Mexico. Call Beth with questions at 505-272-3194 or email babaca@salud.unm.edu.

Awesome!

Shop Til You Drop!

Don't forget to take part in http://www.macysinc.com/shopfo​racause/ August 27th!

You can purchase the tickets from Rachel Hart (RHart@AngiomaAlliance.org) for $5 through PayPal or check. They can be used for online shopping as well!

Macy's Shop For A Cause

www.macysinc.com

On Saturday, August 27, 2011, Macy’s will host its 6th annual Shop for a Cause benefiting charities nationwide. Since 2006, Shop for a Cause has raised more than $38 million for charities across the country. This is your opportunity to be part of the excitement.

Charity Poker Tournament

From Angioma Alliance's blog:

Weird, isn't it?

So. Our neurosurgeon appointment for BBB kept getting rescheduled. They'd call, pushing our less urgent visit off for a few more weeks, because he'd been called away for emergency surgery. It happened more than a few times too. And we were pleased.

We were less urgent. Now that is exciting.

Weird, isn't it, when you've got some MRI results about lesion bleeding you want to talk about and it's labeled less urgent. And you feel good about that. Really good.

But that's just how it rolls, this disorder. Eh?

Because, you know, being on the other side, the emergency side, is horrific. No one wants to be there. A lot of us have. So yeah, cool, reschedule your hearts away. I just hope whoever was the reason behind this scheduling is okay. I really, really do.

The news was all right, too, when we did get in. Hopeful even. So, we'll take that too. Gladly.

We've lost yet another loved one.

Next weekend, new posts. Until then, I must go.

Vacation!

Thank You!!!

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 -- thanks to you all out there. 


Xoxoxo









(Remember, you can still subscribe if you haven't. If you don't have a Kindle, you can download the app. You can also just donate to myFirstgiving page over there (yeah, right over there on the sidebar, I swear, or you can just click this link) if the mood hits ya, or go to Angioma Alliance and see how you can help there. Money's great; it's always appreciated. But they need volunteers and other resources as well. Anyway, my point is it feels good to get to help those who help us. :) It really does.)

Research News

Check out this PubMed study on CCMs. Interesting.

AHAHAHAHAHA!!!!

Dear Bob and BBB,

I know you find your parents mortifying. And it's okay. But always remember...it could be worse.

Love,

Your Mom and Dad



*Big thank you's and xoxox to Ethel for sharing this.

The DNF

Sometimes you don't get the chance. But then sometimes you do, and you get go back and try to finish what you did not finish. There's few things so wonderful, yes?

You were necessary to me...

Three weeks ago, I stood in a graveyard and said goodbye to someone so loved, so young, and we all sang You Are My Sunshine.


It was her favorite song. It once was mine, too. As a small girl in pigtails I'd ask for it over and over.  And then again. Sing it to me, I'd beg. Please. It's the most wonderful song in the world.


So I sang it for her. For us. We all did.


And only days ago, there I was saying goodbye to someone so loved again. Standing by myself, in my gnome-filled garden, singing what was the saddest song in the world to me right then. 

Bob chastised me after. You never taught me that song, he said. You never sang it to me when I was little.

I didn't?

I thought I had. Like, really thought I had. Ahem. But it doesn't matter. It's not too late. I'll sing it with him tonight, anyway. He'll be mortified, as only a tween can be. But so what. That's my job, as a parent. To mortify.

 Then I'll tell him to sing it to his children, as my parents did to me, and that every time he does he'll remember I love him. How much I love him and his brother. He might even listen. And maybe it will be a happy song for him too.

It's not like we should need these reminders. Every brain scan, every test results, is a kick in gut. But even then, we slip into complacency in between sometimes.

So. I suppose even the worst news brings something more to each of us.

Life is good, but it's too short. Don't be too late. Go sing.


"When I looked at you, my life made sense. Even the bad things made sense. They were necessary to make you possible." 

"Songs are as sad as the listener."


 --Jonathan Safran Foer, Extremely Loud and Incredibly Close.

Special Event

The Fifth Annual Cavernoma Alliance UK Forum

Today, Saturday, June 4th from 9 am to 5 pm

For more info go to Cavernoma Alliance UK here. Or here.

Find'em here on Facebook too.