Avm survivors meet & greet

Would anyone be willing to meet up to share theirstory for the world? I know we are all dealing with this but we have to be strong and spread awareness to others! Would anyone mind being onfilm to share their story?

I think this is a great idea. My story isnt all that interesting, more so a story of luck but id be willing to share. When researching avms it was hard for me to find info as readily available for people who had not yet had a major event before discovering their AVM, mind was found incidentally i thought I had the flu and didnt want to miss work! Anyways before I Start rambling, great idea


It is about time we all come together and raise awareness. My daughters Brain AVM was diagnosed 2 years ago on Memorial Weekend. But we had no idea what was coming. There was not much information available. Now 2 years later, 2 brain surgeries, we are going home on March 27, 2016.

I think you would be more successful in raising awareness if you choose a couple of people to narrate their experience in full detail but from a different perspective. Medical, rehab, financial, emotional support, loved ones support, parents, etc.

I would like to hear from single mothers who are the sole caregivers to their AVM Survivor. I feel overwhelmed and would like to know how some parents managed to move on. I wanted to quit my job to care for my daughter 24/7 but need insurance to cover the cost of her therapy. Does any one know of resources or other assistance.

Best wishes

Alethea Warrior mother

Yes i feel like we all need to share our stories for comfort! You made very interesting points! We all need to come together and really talk about how this has changed our lives in every aspect!