We are AVM survivors, here for your support.
Scott's Bio
I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.
It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called AVMSurvivors.org. We realized we were helping a lot of people so we started many more. Today we run 30 online support groups and are growing rapidly, thanks to the wonderful volunteer moderators that help manage the communities.
Find out more about Ben’s Friends at www.BensFriends.org and watch our 60 second YouTube Video at http://youtu.be/YBeRFnJkleU
I’m also at these sites and love new friends!
Twitter: https://twitter.com/scottorn & Facebook: http://www.facebook.com/scottgableorn
If you would like to help us spread the word about patient support, please post about us on Facebook, Twitter and Blogs. Pasting in the URL, or Internet Address, of this community will make it easier for others to find us and get the support they need!
Comment
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Comment by Susan J. E on February 10, 2012 at 8:54am -
I felt like such a misfit until I found this group thank you Scott and Ben.
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Moderator Comment by Barbara H. on February 5, 2012 at 7:54pm -
Hi Scott. I usually welcome members with the phrase...you are no longer alone. That was the toughest part of my AVM experience. I had noone to discuss my worries. This site is a refuge for a lot of members. You and Ben have helped a lot of people!
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Moderator Comment by Louisa on February 4, 2012 at 3:27pm -
Thanks for sending Scott's Bio....You certainly are the best friend for our Ben! I already posted it on Facebook...Thanks for everything Scott!
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Moderator Comment by Trish on February 4, 2012 at 2:54pm -
Scott, I've often wondered how you came to be such a big part of all of this. Now I know. You and Ben have done so much to help so many people. You should be very proud of yourselves!
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Moderator Comment by Ninibeth Ramirez on February 4, 2012 at 2:29pm -
Hi Scott :-)... I am sure a lot of people do appreciate all of this effort..
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This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
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Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
Photos
Blog Posts
My story
Posted by chels925 on June 3, 2012 at 10:37am 0 Comments 0 Likes
Hello everyone. While I do not have a AVM, mine is only a VM. It is in my right cheek. I have been undergoing treatment for it since 2006. My first treatment was in September 2006. I had some complications (I got an infection and went septic). I…
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I moved on ... but I cant escape
Posted by Dansky on June 3, 2012 at 7:15am 0 Comments 0 Likes
The first rupture of my AVM brought me to total shutdown you could say. from normalcy to all of a sudden a twist of life.
I move on ... but I cant escape...
I was at work (luckily I was in office, crowded, people are present, the…
Continue Away for 5 weeks
Posted by ramona777 on June 2, 2012 at 3:51am 2 Comments 0 Likes
Hi to all my newfound friends . may not be online much in the next 5 wks but wanted to say to each and every one of you, many thanks for your welcome, friendship and support. be back soon. If anyone can advise me how to join AVM australia? Thank…
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the appioment went.......
Posted by Celina on May 31, 2012 at 8:59pm 2 Comments 0 Likes
it went good he wants to do a big test on me he has to open the top of my leg then put a tiny cam up my leg into my head i will be put to sleep for it he wants to look at it.
Starting to understand everything...
Posted by Hannahpoppe on May 30, 2012 at 12:45am 3 Comments 0 Likes
Hi everyone!
I'm a new member here...
I got diagnosed with AVM this fall. After having really bad headaches for a long time, I decided to visit the doctor. She made the descision to send me on an x-ray and then they saw a 2cm AVM om…
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Of Seizures
Posted by Jaime G. on May 29, 2012 at 7:32am 1 Comment 0 Likes
I'm being treated for Temporal seizures; simple and complex, aware and absence. The 1st one(went undiagnosed)happened almost 5mos post embolization/craniotomy. In Novemember simple happened 1 or so bi-weekly. This Jan I went inpt for longterm…
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Facebook Feature Supports Organ Donation
Posted by Armando A. on May 28, 2012 at 8:02pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
NUMBNESS
Posted by josh54 on May 28, 2012 at 12:20pm 2 Comments 0 Likes
My AVM was near my right lateral ventricle. It ruptured (very painful) and I had a crainiatomy. After the surgery there were difficulties and I was in a ten day coma. When I awoke the AVM was removed successfully but as a result I have numbness,…
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Coffee in Rockhampton
October 11, 2011 at 6pm to October 10, 2012 at 7pm – Some where with good Coffee
2 Comments 1 Like
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