Raising Awareness & Finding a Cure (21)

Featured Discussions

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Neuro Film Fest - 2012

For anyone unable to participate in the 2011 Film Fest, perhaps you will be inspired to share your story in a video and help bring awarenes…

Started by Patti GLatest Reply

Discussions Replies Latest Activity

Stem cell research

The use of embryonic and adult-derived stem cells for cardiac repair is an active area of research.Does anybody know if there is any resear…

Started by George (Nicoles Dad)

2 May 15
Reply by George (Nicoles Dad)

Help! - AVM brain specialists for children.

We are looking worldwide for specialists who have a broad experience (or the most experience) with treatment of the brain AVMs and AV-Fistu…

Started by sylwia

3 Apr 22
Reply by Barbara H.

My Graduation Project Needs You!

I'm a senior in High school and every senior is given a project in order to graduate. It can be over anything; my topic is over AVM. My pro…

Started by Katrina

12 Apr 9
Reply by Ben Morrell

Listen without Prejudice ! Together we are strong?

Recently i posted a discussion Thinking out loud !!! AVM Survivors research fund !!! Together we are strong. This was my thoughts of the AV…

Started by George (Nicoles Dad)

24 Mar 3
Reply by JessAnn

One step closer in the UK

Great Ormond Street has announced a major fund-raising drive to raise £66m to build and equip a centre for children's rare disease research…

Started by George (Nicoles Dad)

1 Mar 1
Reply by Louisa

Thinking out loud !!! AVM Survivors research fund !!! Together we are strong.

With our AVM numbers increasing on a daily basis, it still seems that we are all clutching at straws with regards to specific advances in c…

Started by George (Nicoles Dad)

4 Feb 27
Reply by Jessica J

Event ideas for Biology Club

Hi Everyone, I am the President of my Biology Club at Suffolk County Community College; I am looking for your help with an event I want to…

Started by Kevin Gandhi

5 Feb 25
Reply by Kevin Gandhi

Moderator

3,999 of us...1 more to go! then 4,000 World Wide AVM Survivors!

Who's next? We've all already been there, and Done that. But now we are even more experienced!

Started by Swami Jim

5 Feb 23
Reply by Suzy E

LET'S HELP OURSELVES! HELP ME TELL OUR STORIES!

More Than Skin Deep: AVM Documentary Campaign Telling Our Stories Okay, I have exciting news! This looks long but definitely worth reading.…

Started by Jaz G.

16 Feb 23
Reply by Jaz G.

How long are we actually away from a cure ?

There seems to be a lot of various research being carried out to find that holy Grail ! a cure for AVMs, We have heard about anti-angiogene…

Started by George (Nicoles Dad)

19 Feb 17
Reply by lakersfan86

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Blog Posts

Counting Down The Days...

Posted by Sam on May 27, 2012 at 3:30pm 0 Comments

I'm counting down the days!!! At the end of June 2012 i have to go to the hospital for another Angio.

Hope to hear good news, that the Embolization and 2 Gamma Knife treatments where succesfull and that after 7 years of fighting the AVM is…

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What up with my ear???

Posted by kristi on May 26, 2012 at 3:17pm 3 Comments

I had a bruit when I had the AVM. It was there all my life. I guess everyone hears it at some point but as an "AVMer" mine was ALWAYS present. We became friends:)

My bruit was my connection to my heart, so I always thought (when I never…

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MRI or angio?

Posted by stephanie on May 26, 2012 at 1:24pm 4 Comments

Click here to visit my latest blog post. If anyone could shed some light on the conclusiveness of MRI and angio, it would be great! The surgeon…

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Stage one complete

Posted by existentialmom on May 25, 2012 at 4:48pm 2 Comments

Merlin came through the first gamma knife well, and we are scheduling stage 2 in August. Her treatment time was 152 minutes! No side effects yet.

We are relieved, but holding our breath against the next 3 months, 6 months, 1 year, 3 years,…

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Thank you

Posted by Cat D on May 25, 2012 at 3:14pm 2 Comments

I only got accepted to this site yesterday and already I feel at home. I hope that this will be good for me and my mom who also was accepted yesterday. We both have been through a lot in the…

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May 2012 AVMSurvivors Community Newsletter

Posted by Ben Munoz on May 25, 2012 at 9:14am 0 Comments

Dear Friends and Family of AVMSurvivors,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…

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10 days post surgery for my brother

Posted by DsSis on May 25, 2012 at 12:37am 5 Comments

David's surgery was May 14th and today, May 24th, we had a series of wonderful things happen.

1) I finally got to see my brother walk (with the assistance of his wonderful physio) - he made two rounds of the hospital ward...I was the last…

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"Executive Function Disorder"

Posted by Hiro on May 23, 2012 at 8:50pm 10 Comments

I had the neurologist appointment on Monday, and he diagnosed me with "Executive Dysfunction Syndrome" that he thinks stemmed from some sort of damage to my left frontal lobe during/after my surgery (that was where my 3 AVMs were), contributing…

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