The first patient network was AVMSurvivors.org, which Ben heroically founded himself as a response to his life threatening AVM aneurysm. Ben felt isolated, lonely and information deprived, so he did something about it, and today there are over 600 people providing support, tips and friendship on AVM Survivors.
Together Ben and I founded LivingWithTN.org and LivingWithAtaxia.org, because we saw the power of patient to patient support networks and wanted to help other folks. Today, those networks are about 150 people strong each, ranging from the casual information seeker to the amazing people who administer them daily (Ro, Sarah, Maeve, Alan, Shalon, Kati, and many others).
Ben started writing a few weeks ago and I would love for you to read it. He talks about his experiences but even more powerful, he samples some of the thoughts and quotes from the people on the patient support networks. These people are so inspirational, I can't do them justice. One day it's an inspirational story about finding support when you felt lost, or a simple phrase that puts everything into perspective, or staying upbeat as you teach yourself to walk again, or a simple observation that makes you realize that you are slowly getting better.
Ben's Friends is going to be a great read, because of the emotion and the inspiration that those stories can provide. I hope you follow along everyday.
One more thing. If you, a friend or family member suffer from a rare disease, and you would like us to start a patient to patient support network for them and their disease, please email us. Thanks.