How many people manage to meet AVM survivors, face to face?

hi guys, im just wondering on how many people managed to meet up with AVM survivors, or aphasic/speech problems in your history? Myself, i only ever managed to meet one person from Different Strokes from the UK (Hampshire) and nothing else. My family havealways been amazing in support when i need it, but sometimes i wish i could talk to others, who have had a similar problem. For me, and the UK, there simply are no groups out there - a few stroke survivor ones, but all are from much older people.

Hi Rich
I know what you mean about meeting with other survivors, I am also in the UK , you are right there are no groups.
I did meet up with an old work mate who's husband had a stroke from AVM, but no one elso.
I am lucky, I have not had a bleed from my AVM but it can feel lonely at times.

Take Care

Hi Rich.

I'm not in the UK but I feel the same way. Being that we are such a small percentage of the world population I assume we are spread out geographically. Add to that most of us have travel challenges so it's not easy to plan a meeting with people close yet far away.

I personally haven't met another survivor. I have talked to a person or two that know someone who have had AVM. It would be nice I imagine to sit opposite someone who can understand. Friends and family can only offer support but can't truly understand.

Maybe you could start your own support group. Maybe make a flyer and see if you can post it at your local hospital? I hope you find the experience and support you are missing.

Sending positive energy and love from across the pond.


Hi Rich,

I haven't met an AVM Survivor face-to-face yet but hopeful to do so in the near future as I know it would be so refreshing to actually sit and talk with someone who completelty understands and can relate to the roller-coaster ride that we've been on.

Holly, you are my neighbor in MA as I live in NH and would love to try to carve out some time to meet face to face. Louisa is from RI and Susan Harris is from MA and would be great if we could plan for the 4 of us to meet sometime. We should make this our next mission :)))!!!


Great idea Michelle. I imagined we might've ended up next to each other in the waiting room at MGH someday. But to sit with 4 survivors would be amazing!

G'day Rich
Because we are pretty much isolated from the rest of the world (and each other too!), a few of us from Australia and New Zealand keep in touch, and let each other know when we may be in each others neck of the woods.
We have casual coffee meets and short outings(weather permitting)as some are survivors, others are just starting their journey.
So its not overwhelming (having too many inspirational people, can be) we may have up to 5 or 6 AVMers(+ family and friends - we encouraged that).
Obviously we exchange war stories, but mostly we have a laugh, and show our support for each other.

Another good therapy - if you can't meet up - exchange addresses, and send each other postcards. It allows you to release,and brag about the awesome world you live in!
Hope this gives you some ideas.
Tone (Oz)

Hi Rich,

I got the opportunity to meet Jessica from California earlier this summer and it blessed my heart! Its an amazing experience to sit across from someone who you know understands what you've been through. I hope and pray you get the opportunity as well. Holly and Michelle, I too live in MA (south shore boston) and would love to meet up sometime with you all to swap stories!

Hello Rich, I haven't met any AVMers face to face who have Aphasia/Dysprax etc as yet. I have been blessed by meeting 8 AVMers (not all at the same time) so far. Just recently we had a meet with an AVMer from New Zealand. Most times, we have family members with us, which is great and we have a lot of fun together. My "bestest" friend has an inoperable AVM & we meet at leaast fortnightly for coffee, talks & laughter as we live close to each other. My "Twin", Louisa, who has the same problems as I have lives in the USA but we keep in touch almost daily. I LOVE our group meets & meeting new AVMers.
Maybe a blog re: Aphasia AVM Meet, in your area could help. I do hope so Rich. Take care.xx
p.s. I am from OZ & know our Tony!! haha

I haven't either. Funny though, I completely forgot I hadn't since I found this site. It's made such a great difference. I still of course would like to meet someone who has in person.

hi all, interesting replies, i guess its hit and miss wether u can manage to find a fellow survivor. Maybe there some other way to have a more advanced group system somehow? Kinda a bit like Different strokes.......?

there isnt many out there and i havent personally met anyone face to face BUT i am looking to start up a charity for research etc in Australia and want to also make it an international thing.....kinda like the breast cancer group they have....God bless

Hi Rich. Several members are having a get-together in Houston TX this Dec 3. At the Cheesecake Factory in The Woodlands. Yum...wish I could be there! I do not know of any events in the UK yet.

Sounds like we should plan a Boston meeting Keith :))!!!

I met a husband of a AVM survivor at the park once just by pure chance. It was a rare encounter but a good one.

Hi Rich,
unfortunately there aren't too many of us in New Zealand that are on this amazing website but when i was in Australia's Gold Coast i managed to meet 3 beautiful Ladies Lesley, Judy and Jazzi. If you have the chance to meet them it will make your journey seem a lot easier!
KAT xx

I met with 3 other AVM survivors and their husbands a couple of years ago. We met through this site and arranged a meet up. It was great! We've been trying to plan another meeting but it's difficult getting everyone together at the same time. I hope you are able to meet fellow AVMers in the UK. Perhaps some others here will reach out and you can make it happen.

lets put it out there then guys, how bout a uk avm survivors meet up?? see what interest we get first, could then arrange a meet up depending upon geographical interest.
whos up?
who knows perhaps we could sort out a world meet, nothiings impossible

I'm so jealous Keith. Jessica is awesome. Hope the meeting was awesome! And I didn't know you were a member. If I had never said it before, welcome!

Hi Barbara...Going to be there at the Cheesecake Factory this weekend (yes yum). Looking forward to it!

I'm up for that Phil