Avm Survivors Network

Slideshow Transcript

1. Slide 2: Our Mission
2. Slide 3: Quick AVM Facts • What is an AVM? – An AVM is a blood vessel abnormality that can unexpectedly rupture. A cerebral AVM is particularly dangerous and potentially fatal. • How many people have an AVM? – 300,000 Americans (est.) • How many will experience symptoms? – 12,000 Americans per year (est.) • How many die or suffer permanent brain damage from an AVM? – 3,000 Americans per year (est.)
3. Slide 4: Emotional Support • Only a mailing list exists today for organized emotional support. • We have to rely heavily on family and friends during this difficult time.
4. Slide 5: Proposed Features •Survivors and Relatives Forum Social •Personal Profile Networking •Photo Sharing •Comments and Personal Messages •Physician Database Resources •Counselor Database •Expert Forums •AVM Articles •Badges Etc. •News feeds •Members Only Access
5. Slide 6: Technical Details • Ning provides a mature platform where one can create a full social network for free to customize and brand as desired. • Cost: $200/year • Funding source: Corporate grants and member donations
6. Slide 7: Feedback I think this is a great idea. My son had an AVM bleed when he was 8 years old. I think it has been extremely helpful to speak with others that have had bleeds. (Nikki) Ben, this is a wonderful idea and I shall look forward to hearing from you again about it. Thank you ! Best wishes for your good health , always ! (Sally) If I knew about a site when I was diagnosed Feb 2006 it would have helped me (Jennell) In the hope that your network of AVM sufferers can give me more insight, and also that I'll meet some people with the same condition I'm looking forward to your reply. (Kersten) I think a neurovascular surgeon, to answer questions or provide some input on concerns would be great. (Gigi) Sounds like a wonderful idea, Ben! When I was first diagnosed, no one around here had ever dealt with an AVM. I didn't know if I'd be alive for Christmas...I wrote my kids farewell letters and bought their presents right away, just in case. I'm starting to cry now, remembering. (Corinne)