Our Story

We are AVM Survivors, Fighters, and members of Ben's Friends Patient Support Communities.

 

And we are awesome!  Just ask any of the 7500 members of our 24 support groups.  Each and every one of them is affected by a rare disease and actively sharing stories, supporting each other, and raising awareness.

 

AVMSurvivors.org is our support group for those affected by AVM (Arteriovenous Malformation) a deficiency in the cardiovascular system characterized by abnormalities between the arteries and veins. Malformations can occur in different parts of the body, and can cause fatal strokes when the tangled blood ruptures.  With Nearly 3000 members across the globe, AVM Survivors is our first and largest community and was created as a result of Ben's brain hemorrhage in 2006 and his desire to connect with others who shared his experience.

As this year's Team Captain, Shalon is excited to use the walk as an opportunity to hang out with her AVM family.  While she typically only knows them online, the connection and feelings of kinship shared by each member couldn't be more real if she saw them daily.  AVMSurvivors.org is the kind of group that is brought together by tragedy, uncertainty, and hardship, but stays together because of the awesome people, kind hearts, and generous spirit of our members.

The Impact

This is officially the third year AVMSurvivors.org has participated in the TAAF Aneurysm & AVM walk in beautiful San Francisco.  We KNOW how important it is to raise awareness and support TAAF(The Aneurysm & AVM Foundation.)  We KNOW how scary it is when people find out that they, or a loved one, has suffered a bleed or stroke.  And we KNOW just how lucky they feel to connect with others who understand what they are facing.  After all, we ARE survivors and fighters!

This Awareness walk is growing each year and is allowing all of us to make an impact, to share knowledge, and to help people.  What is better than that???  Nothing!  So help us help others.  Consider this your good deed for the day.  And actually, go ahead and consider this your good deed for the year too!  (Of course that does require a bigger donation.)

What We Need & What You Get

This year's fundraising event is twofold and will be split 80/20.

First and most importantly we are raising money for TAAF in their mission of being, "Dedicated to bettering the lives, support networks, and medical care of those affected by aneurysm and other types of vascular malformation of the brain."  TAAF is strictly a pro-bono organization with virtually no administrative costs. The goal is to direct money where it is needed into research and public education. You can see the many ways you can help by going to the TAAF website and viewing the Get Involved or Donation sections of their website.

Secondly we are raising money to support Ben's Friends Patient Communities.  A smaller portion (20%) of this fundraiser will help to pay for the AVM Survivors site, which is free of charge to all members.  BensFriends.org is a mission-driven company dedicated to providing safe and supportive patient communities for anyone affected by a rare disease.  Your donation will help us continue to build communities and provide much needed and free support to thousands of people affected by rare diseases.

What do you get???

Other than the warm and fuzzy feeling you get by doing something good for another person, we actually have "stuff!"  Fun and Pretty things (Special AVM edition Brainbows, Lion Snaps, and Butterfly Charms,) AVM Walk T-shirts (I'll message you for size info), Hugs...yes, I said hugs, awesome Art Work, and even dinner with our fearless leader Ben!  And just to help entice you, here is a sneak peek of a few of our items!  Our newest T-shirt design is great.  And how cute our all of our little Fun or Pretty items?  Seriously, how can you resist?

 

 Check out our tiers to the right and decide just how much you love us and want us to love you back!  Well, we love you anyways no matter how much you decide to donate.  Heck, we will love you just for checking out our page cause that's how we are.

 

Other Ways You Can Help

Share the love!  No really, PLEASE SHARE.  Email your friends and family, and post a link to our fundraising site www.indiegogo.com/avmsurvivors on your facebook page.  And of course, don't forget to "like" all of us too!  (TAAF, Ben's Friends, and AVM Survivors all have their very own facebook pages.)

Since you are feeling so generous now anyways, how about writing about us on your blog, or submitting our story to other "Feel Good" sites and news outlets.  Post a comment above to tell us you think we are super cool.  Don't forget to visit us often to find out how our fundraising is going and to watch our very cool Movie Trailer again.  But ultimately, please let others know how they can help us out!