Showing posts with label Angioma Alliance. Show all posts
Showing posts with label Angioma Alliance. Show all posts

Thursday, October 18, 2012

Ten Years Old!!!


Angioma Alliance turns 10 years old this year. And though we can count the years, it's impossible to count exactly how much good it's done...

Read more in the Angioma Alliance newsletter here...

Want to show your appreciation????

Go here and go here for some ideas on how...

(And HAPPY BIRTHDAY to my youngest son, who turns 14 today. YAY!!!)

Sunday, June 10, 2012

2012 Annual CCM Scientific Meeting

Angioma Alliance is hosting the 8th annual CCM scientific meeting to be held Nov 15-16, 2012.

Experts in the field will gather and discuss the latest advances. Stay tuned for more info.

Thursday, May 31, 2012

Angioma Alliance Zombie 5k Run for Research



I'm so dying to go to this.

*snicker*

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. 





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 amy.akers@angioma.org.

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: 
22291017)

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

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.

Thursday, November 17, 2011

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!

Tuesday, November 1, 2011

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. 

Thursday, August 25, 2011

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!

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.

Friday, August 12, 2011

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!
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:

PokerTournamentAnnouncement

Wednesday, July 6, 2011

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 thereMoney'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.)

Friday, April 22, 2011

Become an Angioma Alliance Partner



Do you sell on-line? Are you interested in donating a portion of your proceeds to an amazing organization?

Yes?

YES?!!?

Then check out this blog post full of awesomeness. Angioma Alliance is looking for partners to share in their upcoming storefront.

For the fyi, check it out and then email info@angioma.org

Wednesday, April 6, 2011

Thank You



So. I don't talk about it much but I have this day job. I write. (I wish I could say it was lucrative or glamorous or well, lucrative. But eh, what can you do.) Anyway, when I do get paid I always donate my royalties to charity because, well, because.

I really appreciate everything organizations like Children's Hospital of Boston have done for us. So, you know, it's good to give back when you can. And I swore that if this blog made any $$$ it would go to a charity directly involved in making Angiomas a tad less suckworthy.

Anyway, this blog is offered on subscription on Amazon and while it's not a lot it's still something which is actually quite something-- thanks to you all out there we got us our first royalty check to donate to Angioma Alliance. SQUUUEEEEE!!!!!



Let us celebrate!!! Donuts and boxed wine for everyone!!! We did it!!!



(The war isn't over, though. But hey, 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 my Firstgiving 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.)

Saturday, April 2, 2011

Fundraiser Event!

Don't forget!!! 

 There's a fundraiser event today, Saturday, April 2nd.

Where: Blanchee Boutique
           89 Main St
           East Rockaway, NY 11518

Spend the afternoon shopping at this dress and bridal shop, all while raising money for Angioma Alliance.

A big thank you to Blanchee Boutique, too. Way to rock.

Friday, March 25, 2011

Fundraiser Event!

YES!

When: Saturday, April 2nd

Where: Blanchee Boutique
           89 Main St
           East Rockaway, NY 11518

Spend the afternoon shopping at this dress and bridal shop, all while raising money for Angioma Alliance.

Go, go, go!!!

Friday, January 14, 2011

Registration is open!


Registration is now open for the 2011 Angioma Alliance Patient Conference in Dallas, Texas on March 25-27!!!

Just follow this link:

Here.

Registration IS limited, though. So go, go, go!!