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

Merry Christmas!!!

Wishing you the happiest of holidays!

Happy Hanukkah!!!

Giving Good

AOL's Giving Good finalists are being announced this week...

holding breath...

waiting...

Angioma Alliance Winter 2011 Newsletter

The Angioma Alliance winter newsletter is available! Go here and get yours.

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. 

Reader's Digest Tell Your Story

Read Hannah's story about her daughter's struggles, or share your own, and definitely don't forget to vote on your favorites!

To celebrate the publication of Life…The Reader’s Digest Version: Great Advice, Simply Put, Reader’s Digest is hosting 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.

As Hannah's story shows, this is a great way to spread awareness and share your experiences. Go!

Things I Love...

Getting your emails.

Sometimes I'll get one and it's from someone sharing some great link or fundraiser or book. (Adore those.) I can't get enough of those, either.

Sometimes it's from someone who offers to help in whatever way, or knows of someone who can help spread the word.

And sometimes it's from someone who just takes a few minutes out of their life to say "Hey, I stumbled across your blog and just wanted to say that CCMs do suck, but like you I'm not going to let my life suck as a result."

I more than adore those emails. I really do.

Don't Forget!

From the Angioma Alliance blog!

Trees, trees, and more trees...

Laying on our wires. Blocking our streets. Littering our lawns.

*sigh*

Anyway.

Here it is, four days after Hurricane Irene blew away. (Actually, that was Tropical Storm Irene to some of us in the Northeast. Thankfully.) The kids have started school (YES!). The hum of generators has now been replaced by the revving of chainsaws. My cable works.

Life is pretty much back to normal for us. 

Though, okay, the trucks and chainsaws are getting on my nerves. I know, I know. Still. The house shakes and my heart stops every time another tree drops. Just saying.

*SIGH*

But we are good. Our home is good. The lawn is going to be good. Eventually. The pool will probably never be good again but it's fine. Snow's coming in just a few months, right?  (Note to self: remember to put cover on pool BEFORE next storm. Doh.) So everything is pretty good.

I just hope those of you out there who were also touched by Irene are doing as well too. . .

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.)