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.

How I Did it: The IPR

In record time too.

9:19 am: log-on to International Patient Registry, scroll down, and click the Join Now! button. Sa-weet. I love when things are that was easy to find.

9:20 am: fill out registry info. I will just say, though, that I hate when passwords are case sensitive. Gah. It's early. I've only one cup of coffee under the belt so far. Trying to come up with something creative...

9:21 am: email arrives with sign-in info. I'm official. Yes! I love being all official.

9:22 am: trying to log-in.

9:23 am: still trying to log-in.

9:24 am: *head-slap* I'm such a dork. I just registered. How could I have forgotten my sign-in so quickly? Completely blaming lack of coffee.

9:25 am: get SECOND cup of coffee. Eesh.

9:26 am: finally signed-in after successfully remembering who I am. Thankfully. Opening link for questionnaire.

9:27 am: a little confused over filling out of name. I'm answering for affected person, but is it asking for affected person's info or mine? Hmmm. Oh, well. Answering with BBB's.

9:29 am: so far, so good. It's asking for pretty basic info, all voluntary. Stuff like race. Age of dx. Dx. Meds. Doctors and location. Any health issues. Medical tests done. Piece of cake.

9:33 am: a small piece of cake, however, because I'm a bit fuzzy on dates and names. Blaming coffee again. It's okay, though, because they've included lots of unknown and other buttons as well as fill-in boxes. Loveee that.

9:36 am: that's it. I'm done. And I would have been done so sooner, had I more coffee.

And a donut. A donut definitely would have sped up the process.

Anyway, seventeen minutes, start-to-finish. Who can top that? Hmmm???? Just maybe drink more coffee first...

International Patient Registry

Go, go, GO!!!! The International Patient Registry for those with CCMs. Just bring me back some donuts. Thx.

Some like this would be great. Ohhhh, pretty.

International Patient Registry

Just cause I haven't mentioned it in a while...check out the International Patient Registry.

NOW!

International Patient Registry

Let's celebrate! There's now an international patient registry for those with CCMs. YES!! To register, see the latest research news, or just check it out, go here.

And an enormous thank you to those who took the time and effort to do this for us...many donuts we wish for you...and I wouldn't even ask you to share, for that is how much I love you for doing this.