Angiomas Suck.

Make no mistake: Cavernous angiomas suck. But your life, well, it can still be very okay.

Saturday, September 1, 2012

Angioma Alliance Summer 2012 Newsletter

Check it out here!

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Angiomas Suck.

Angiomas Suck.
Life Doesn't Have To.

Now Available On:

  • Amazon for Kindle and Kindle Apps!!

Who Am I?

Welcome. My name is Kelley, and I'm a mom (to Bob and Bob's Big Brother), wife (to Hubby), writer, and lackey to three cats. I like donuts just a little too much.

My oldest son, BBB, was (finally and correctly) diagnosed with Multiple Cavernous Vascular Malformations at the age of seven.

It sucks. The surgeries. The seizures. The unknown. But somewhere along the way, I made a decision--I wasn't going to let our lives suck because of it. If anything, I thought maybe, just maybe, we could even make the world a tad better because of it all.

This blog is part of how I'm trying to do that very thing.



What IS This Place?

A blog.

It's just a blog.

But it's also about how I refuse to let those crappy cavernous angiomas take over. So I post stories. I post how I'm trying to look on the bright side. Because I am, I'm trying to find a bright side.




Um, What's A Cavernous Angioma?

Call'em whatever you like: cavernous angiomas, cavernomas, cavernous malformations, cerebral cavernous malformations, cavernous hemangiomas. The names are all interchangeable; they all mean a clump or clumps of abnormal blood vessels in the brain or spine; they all suck.

Yes. They do.

Looking For More Info On Angiomas? Or Want To Connect With Others?

  • About CCMs at Angioma Alliance
  • Angioma Alliance
  • Angioma Alliance Forum
  • Health Boards forum--(Cavernous Angioma board)
  • Angioma Alliance newsletter-summer 2010
  • Brain Injury Success
  • Neuroscience Forums
  • Cavernoma Alliance-UK
  • CCMs-Boston Children's
  • CCMs-Brain-surgery.com
  • CCMs-Brainaneurysms.com
  • CCMs-Mayo Clinic
  • CCMs-MGH
  • CCMs-NIH
  • CCMs-Right Health
  • CCMs-Stanford
  • CCMs-WebMD
  • CCMs-Wikipedia
  • International Patient Registry
  • DNA/Tissue Bank
  • Neurological Focus Issue on CCMs
  • Hannah's story for Reader's Digest on FB
  • Patti's Story
  • Patient Advocacy on YouTube-thanks, Patti
  • Patti's Journey on Youtube
  • Grace Doran's story on YouTube
  • Fasudil Drug Study
  • Statin Research

How Can You Help?

Easy.

Know of any good links, websites, or news? Email me at swanka (at) live (dot) com.

Have "One Piece of Advice," a story, or just want to share a thought? Email me at swanka (at) live (dot) com or leave a comment.

Link back to me. Link back to other wonderful sites such as AngiomaAlliance.org. Because the most important thing is that we spread the word. Most people know nothing, absolutely nothing, about angiomas. And you can't defeat something that you don't even know exists...

Want To Donate?

Of course you do. And we families struggling to fight against brain angiomas need your help. To learn more, go here and here. Interested in donating? Then go here and here. You can also check out the Firstgiving widget below or follow this link to my day job. Maybe even consider pick up a copy, or fifty, of any publication where my writing appears. I donate a portion of all my payments and royalities earned, so you're helping me to help others by reading. I thank you.

Fundraiser Events!

  • 10/12 Zombie 5k Run for Awareness, Milford, MI
  • 6/12 Jump for Zane
  • 3/12 3rd Annual Fun Run/Walk, Dallas TX
  • 2/12 MadoroM Charity Wine Auction, Bakersfield CA
  • 8/11-Macy's Shop For A Cause
  • 8/11-Poker Tournament
  • 7/10-Allentown, PA Flapjack Fun
  • 8/10-Plymouth, MA Party & Silent Auction
  • 9/10-Ogden, UT Walk
  • 9/10--Houston, TX Walk/Run Fun
  • Ongoing-Book-It-4-Brains

People Who Rock

  • People Who Rock

Disclaimers and All That Legal Blah Blah Stuff

Hi.

I'm not a doctor. I'm not a lawyer. There's a few editors who might argue I'm not even a very good writer. (Though I like to think I might be an okay mom and wife, but, well, you know. It's all subjective, right?) So, don't take my word for anything, especially when it comes to medical issues. It's all just my opinions, thoughts, and personal experiences.


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Blog Archive

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      • Angioma Alliance Summer 2012 Newsletter
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Blog List

  • T.B.I. To Be Invisible
    Glass half full
    9 years ago
  • Thankful for everyday!
    6 word story
    9 years ago
  • Heidi's Spot
    10 years ago
  • Angioma Alliance Blog | News and Information about Cavernous Angioma
    2012 Scientific Meeting Update–Moving Towards a Cure
    12 years ago
  • The Chronicles of a Rebel Brain
    Day 3 - Trouble Begins - New Year's Eve
    13 years ago
  • The Care and Feeding of a Cavernous Angioma
    14 years ago
  • brainstem cavernoma
    Gamma Knife Surgery
    17 years ago
  • Incompatible Browser | Facebook
  • Cavernous Angioma and Children - Angioma Alliance's MySpace Blog |
  • Angioma Alliance | Facebook
  • Cavernous Angioma | Facebook
  • Post Surgery Maddness Cavernoma : I The Crazy World of Post-brain Surgery Story & Experience
  • Reading Brain Injury
  • The Life of Baby Zeke
  • Girl With a Pearl Size Cavernous Angioma
  • Blogs | The Project 2020

Books On Angiomas

  • Struggle To The Summit-memoir
  • Since I Was Dead-memoir
  • Out Of The Blue-memoir
  • Slow Dance-memoir
  • Brain Storms-nonfiction
  • Dipped Into Oblivion-memoir
  • The Unstoppable Life-memoir (AVM)

Patti's Journey

The Project 2020

Are You Fun To Be Around? from 2020 project on Vimeo.

Link Love

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    1 month ago
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    1 year ago
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    Adjust contrast of a pdf free
    7 years ago
  • Behler Blog
    Get Back to Work!
    7 years ago
  • The Rejectionist
    call for submissions: african-diasporic herbal
    7 years ago
  • leftbrainwrite
    Bearing Witness--The Wall
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    9 years ago
  • The Kindle Blog Report
    Website Review: Hookah Shisha
    10 years ago
  • De's Stories
    I Write because it Relaxes Me - Cindy Freland
    10 years ago
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    Measuring the Value of Promotional Marketing
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  • THE NEW LITERARY AGENTS
    A New Home for This Blog
    11 years ago
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    kara-mustafa
    12 years ago
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    In to Win Wednesday Giveaway Roundup 5/9
    12 years ago
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    13 years ago
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    Movie review: Angel
    13 years ago
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    I'm Back!!!!! For Anyone Still Out There - An Update
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    Awesome Agent Contest!
    13 years ago
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    13 years ago
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    14 years ago
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    I'm Sure You Know This Already, But I've Moved
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    Art?
    15 years ago
  • Garth Stein :: Official Website :: The Art of Racing in the Rain
  • Words to paper...
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  • Elvis, Elves, and Chocolate Chip Cannoli
  • Life in Retrospect
  • Lori Brighton
  • pointless-drivel.com/
  • whereismyslingshot.blogspot.com/
  • Natasha Bennett's Blog
  • Sarah E. Moffett
  • Winterwriter writes
  • Legend of a Freak
  • Maggie Lyons
  • K.S. Brown Books
  • Timothy Trimble - Words and Worlds
  • The Write Yarn
  • MOTHER WOULDN'T LIE!
  • Plotting Worlds - Blog
  • Novelist Who Gets No Love...
  • A Writer's Edge ...
  • Behler Blog

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