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!!
]]>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
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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!
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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 (BrainFreezeChallenge.com). 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!!!
]]>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.
Please join us in our effort to spread awareness by using the #BrainAneurysmAwarenessMonth tag on Facebook and Twitter, SHARING our banner (and daily updates), and using the banner as your profile image! If you are a blogger, please feel free to use these images in your blog, to share with your readers information about Brain Aneurysms, or just to show your support for the movement! (You can find the banner images at the bottom of this post!)
The “folder” that we will be uploading all of our images and graphics for this month will be HERE, so you can easily find and share them on your own walls.
Every day, as much as possible, I am going to edit this post with a new fact, resource, or video about Brain Aneurysms, so keep a look out for updates every day!
Daily Graphics and Updates at
AVM Awareness Project on Facebook
Can you share with us how YOU are going to be “celebrating” Brain Aneurysm Awareness Month?
Burgundy for Life is a branch of the AVM Awareness Project, where I create and sell various hand-made and hand-designed products to spread Arteriovenous Malformation and Aneurysm Awareness.In the past month and a half, I have been very busy designing and creating bracelets and wristbands for various causes (AVM/Aneurysm, Lupus, Your Cause, etc.). We have also raised $50 for Ben’s Friends Patient Communities in the past month via the Ben’s Friends HOPE Bracelet sales (with 20 bracelets sold and shipped). The HOPE Bracelets are the best sellers in the shop, and I make every one by hand, to whatever preferences the customers have. In the past month and a half, I have sold almost 40 of them (given, 1/2 of that are Ben’s Friends HOPE Bracelets, which make them the most popular type).
Another product I have is the “Burgundy for Life” Wristband. They are burgundy colored silicon awareness wristbands with the text, “Burgundy for Life” and “avmalformation.org“ embossed in them, along with 2 ribbons. With 30 sold, we are almost able to pay it off, and whatever extra we can make over that can go into ordering more of them.
I also sell AVM & Aneurysm Awareness Stickers that I designed a few months ago. All in all, I have been quite busy, making bracelets, designing new ones, working, exercising (I need to get healthier and keep my recovery process forward!), and planning for the FIRST Mid-Atlantic AVM/Aneurysm Support Group meeting that is in less than a week.
Facebook Milestone: 290 Likes!
We reached 290 Likes yesterday, and today, we are at 291. I didn’t expect to get to such a high number ever, and most certainly in not this short period of time. I am overwhelmed daily by the amount of support I have been receiving for this project, and very thankful for everyone who has been contributing, whether just by visiting the AVM Awareness Project, Liking the Page, joining us in the Support Group, or purchasing a bracelet.
- Never miss our update by following us on Bloglovin!
Team Tucciarone is holding a benefit lunch and raffle event for their friend, Christine Tucciarone, on June 30th, in Liverpool New York. You can find out more information about the event, location, and how you can donate to help alleviate some of her medical expenses here: Team Tucciarone: Benefit for Christine.
If you are interested in helping, but cannot donate money, please LIKE their Facebook Page, and SHARE the event post we have posted on our Facebook Page! That would be an enormous help in raising awareness for her benefit, as well as Arteriovenous Malformation!
]]>The section has a page dedicated to every individual, and we accept any kinds of “stories” ranging from narratives, poetry, an autobiographies, to videos, compositions, photography, and paintings. Anything that tells a STORY about you or your loved one’s journey with AVM/aneurysms is welcome!
For more information, please visit “Stories,” or e-mail [email protected]!
The “Offline” section houses a calendar, directory of regional support groups, list of upcoming events, a submission page for events and support groups, and a page dedicated to ways YOU can help spread awareness.
The calendar was set up by Melissa of Spookydot, and has a monthly calendar list of support group meetings, and when we have events listed, of the dates of events. You can search via categories (events or support groups) when there are events to be listed, and when you click on the occasions in the calendar, it will take you to a page filled with information and maps to the location of the event/support group meeting.
Please submit your regional support groups and upcoming events related to AVM/aneurysms HERE! We look forward to adding more and more to the directory!
We have also reorganized the Site Map so that it is much easier to navigate and use now. If you are ever lost, give it a visit!
New links have been added to the link directory, and new articles for supporters. There have been updated everywhere, and tweakings of pages as well, so be sure to check out all of the sections!
Also, I made a video for my graphic design class final project. This was the first semester I started working with Photoshop, and I don’t think my professor will ever understand what tremendous difference she has made in my life and the network of amazing people I have created thanks to now using Photoshop and Illustrator to create Aneurysm/AVM Awareness related things!
We have new people, more content, and still enthusiasm to bring you information and resources about Arteriovenous Malformation and Aneurysms. New with this update are the “Stories” section, where visitors are encouraged to share their stories and products with us to share with the other visitors, and “Offline,” where we will be having a calendar filled with regional support group meetings and events, as well as pages dedicated to listing regional support groups and various events, such as 5Ks and fundraisers.
Please visit #AneurysmAwareness Project for Aneurysm/AVM Awareness Stickers.
The upgrade in interface was made possible by generous donation of time and skills by Melissa of Spookydot.