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TAAF 5K Walk 2016 (5/15)


It’s officially a week away! I will be participating in The Aneurysm and AVM Foundation’s Annual 5K Walk in San Francisco! I’m starting to pack my bags (somehow I think this suitcase is too small??), and will be leaving on Wednesday.  I am almost 100% at my fundraising goal, and I cannot wait to meet all the wonderful people I have been conversing with online for years…! Will you be attending? If so, let me know! I hope to see many people there!!

Burgundy For Life Network Website

For the longest time, Burgundy for Life did not have a “central homepage,” where all of our initiatives and projects were linked from. Today, I finally set one up! The URL is!

I hope you will bookmark this website as well, so that when new projects or initiatives are added to Burgundy for Life, you will be the first to know!

In related news, our Facebook Page now has over 2550 Likes! (Maybe we will reach 2600 before 2016? A girl  can dream, right?)

Our Facebook Support Group is as active as ever, with 780 Members, and I recently celebrated my 4th Annie-Versary (craniotomy anniversary).

Pretty great ways to send off 2015, and welcome 2016!

I hope you will look forward to everything we can accomplish together in the upcoming year! 🙂

xo Burgundy for Life


Facebook Page Renewal!

Hello, fellow survivors and supporters! I am here to let you know that I just completed a renewal of our Facebook Page, which can be found at .

I have changed the name from “AVM Awareness Project,” which has been the group name for years now, since our inception in 2012, to “Burgundy for Life,” which is a logo and slogan we are much more well-known for.

Also, our Facebook Group is also active, with now over 630 members! Burgundy for Life (AVM/Aneurysm Awareness)

Please continue your support for our cause, and we look forward to seeing you there!

AVM/BA Brain Freeze Challenge

September is Brain Aneurysm Awareness Month! To celebrate, we have organized the AVM/BA Brain Freeze Challenge, with the help of our support group members, and we hope you will participate! For the AVM/BA Brain Freeze Challenge, we challenge friends, acquaintances, families, and strangers to drink a smoothie or a slurpee as quickly as possible, and donate $5-10 to a foundation or organization that helps patients and research of Vascular Anomalies (which includes AVMs and Brain Aneurysms). More information, other ways of participating (for those of us with medical sensitivities), and organizations we recommend donations to are all listed on the website, AVM/BA Brain Freeze Challenge ( You can also visit us and post your contributions/challenges to the Facebook Page. We look forward to seeing your challenges!! 🙂 Also, because of popular requests, we are again doing the Daily Brain Aneurysm Facts campaign on our Facebook Page (AVM Awareness Project).  Please share and help us spread Brain Aneurysm Awareness!!!

Dear Friends.

Dear Friends,

Think of me as your smartphone. I’m cool, I do lots of things, and I enrich your life (hah!). Your smartphone upgrades periodically. It looks fine on the outside, since all you did was update its OS. But something big is happening inside, in its core and ‘brain.’ When it happens, it’s probably glitchy and slow for a week or two, until its bugs are patched up. Then, it’s faster, smarter, sharper.

You probably keep your smartphone for about 2 years (mine never lasts that long!). Basically, that 2 weeks it lags on, until the bugs are fixed, is about 1/50th of its lifespan. If we compare that to my lifespan, with estimate that I will live for 75 years (I’m going to be generous!), that’s about a year and a half. Your phone probably updates once a year, so it happens twice: that’s 3 years for me. “Fixing up” my “glitches” is going to take time!

I may have lost some Memory (I had an appointment??) and Data (What DID I know about Differential Equations, back in the day?), and some of my Applications weren’t backed up either (Cooking? What’s that?), but that just makes room for many NEW memories and data and applications, right?

I may not be able to do what I used to be able to, but every time your interface and OS changes, you grumble for a while, and then even forget how it used to be, a few weeks later! Some features were dropped, new ones were added, and layout changed.

My brain is currently re-calibrating, re-networking, re-wiring, re-learning, to bring to you a smarter, faster, sharper me. Please be patient.

I’m not whom I used to be, and I will probably never be exactly whom I used to be, but that’s okay, because what’s important is that I am here, working hard, and taking steps forward.

Please accept me as I am, and help me along in this journey. You may see me as “having glitches,” but in reality, I’m “updating,” to an improved and bigger SURVIVOR, with so much more to offer than I used to.

With Love,
Your Survivor Friend.

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