I was wondering if anyone would be interested in a meet up for those near by to london? Would be great to actually meet people who also have/had an AVM or know someone close to them who has? Are there any events in place already where this is possible?
Don’t know of anything current but London is an easy place to get to, so I could get there OK if you fancy setting something up.
That is awesome to hear! Hopefully I can get a feel for how many people are interested and think of some good places to meet up
Hi Corinne / Dick
I am writing on behalf of my 16 year old daughter Mia who has AVM’s throughout her right leg and foot. We are in North West London and would be very interested in meeting other AVMers here. Perhaps we could arrange something?
That would be good! Shall we wait for a few more takers, then organise something? Any ideas on interesting places to visit & socialise? I know there are a million places in London… but ideas? Places you fancy?
im a bit too far away, from southampton; happy to meet up in the hampshire area (which is right next to london! )
Im thinking its good wait to see how many people would be interested in coming along too!
Ziferblat is a cafe ive always wanted to go to. It is a cafe with a unique style. You go there and you pay by the hour for your stay (£3 per hour) and you get access to unlimited tea/coffee and buscuits,pasteries,bread,spreads and they provide a relaxed atmosphere, they have lots of boardgames there. Very hipster but sounds like a place we could chill out and talk easily! Located in Shoreditch ( link: https://www.tripadvisor.co.uk/Restaurant_Review-g186338-d6001452-Reviews-or10-Ziferblat-London_England.html#mainReviewContent)
Any other ideas welcome ofcourse! would love to meet you all!
Ahh thats a shame @Rich2 , well if you are around london at any time do let us know! And ill do the same if I am around your area too
I agree, we need a few more takers, ideally.
Is there somewhere interesting to visit near Ziferblat? I’m sure I can get to London cheaper than Rich but it is a long way, so it would be good to be in a place near a museum or other site of interest that might take up part of the day.
If anyone fancies a different location, I keep promising myself to go to Greenwich but haven’t found a good excuse yet. Or, meeting in or near an interesting museum would work for me.
I like the idea of an excuse to come to London!
Any other (near) Londoners interested? @carolb01, @jap001, @Amanda13, @Laura80, @mandyw?
It would be great if there were others out there that would like to meet up.
However, ideally we would need to be able to drive to meet you as travelling by train and possibly with a wheelchair can be challenging so Shoreditch although very trendy and interesting would not be easy to drive/park to. Sorry to be difficult!
Didn’t think about Mia being in a chair! Any ideas of places either central London that you know you can get to reasonably, or NW London where you might lure the rest of us?
There are the natural history and science museums in south kensington, they both have lifts with wheelchair access to the differant floors, have parking spaces. This could be a good option for both entertainment and potentially ease of access(if you can drive there okay, I know its got direct links from the underground). Also london zoo is wheelchair friendly!
I found this link for other ideas of attractions we could go to:
Here are some tours we could look into too:
Let us know if theres anything that particularly interests you, im open to whatever
Well, there’s plenty to choose from there. I could probably do any. I’ve been to the Science and Natural History museums a fair bit. Mme Tussauds is probably v expensive, as is the Eye (for what it is). My favourites would be the British Museum, the V&A and I’ve never been to The Globe.
We don’t seem to have too many other takers for a get together yet but I’m OK if it’s a small but perfectly formed group.
Im happy to go to the globe or other museums @Jaycee how about you and Mia?
The British Museum sounds great! I have always meant to take Mia there but just haven’t got around to it. I have to say she is a bit reluctant to meet other AVMers. She says everyone’s AVM is different … but I think it will be good for her.
How many are we now?
Hey! Yeah ive never been to the british museum before either, would love to go
Ill have a go on the other subs and see if there are any more takers. For now we have: me, you and Mia and Richard which will be great either way too
I totally understand Mia’s feelings about us all having differances in AVM and experience with it, but that is also the thing we have in common. We all know what it is like to feel alone with this unusual condition when we are diagnosed, to feel scared, to feel like no one could understand. We are all from differant walks of life, differant situations, affects us in differant ways to different extents.
I understand Mia. I’ve been thinking about it myself… my AVM is invisible, whereas hers I assume is less so. Equally, I can do most (sensible) things, so it isn’t limiting me at the moment. My head used to have a big pulse on the back that would show, and when it was first treated, felt more swollen on one side but I’ve got nothing to show for it just now.
As Corinne says, the common ground is going through similar worries, similar procedures perhaps. To go to a worthwhile venue is good, too.
My plan is to just come as me but if it would help, I might persuade family with me. I asked the other day and wasn’t greeted with enthusiasm but I could ask again!!
Are we thinking a Saturday? I can do Sundays or I could squeeze an afternoon / evening but a Saturday would work well for me.
At the end of the day, my enthusiasm for meeting is that I’ve shared a lot with a slightly anonymous world and it would be very nice to meet people face to face. Equally, half my motivation on here is to support other people, so I’m keen to turn out for an event if it helps you guys. I think the four of us is OK but it would be great if others fancy coming along, even if only for a cup of tea. Hint hint anyone reading…
Lots of love,
Thank you both for your understanding.
As Mia is still at school, a day time Saturday or Sunday would be better for us if that works for you both too.
Currently thinking about 14 October meet up, if anyone wants to join us…
We didn’t meet on 14 October and are still planning to set a date so if anyone else is interested, let us know!
Hey all following this post! Managed to meet up with @DickD in Coventry for a hot drink and was lovely to chat and meet a fellow AVMer in real life. Still keen to do this london meet up when people are more available too!
Do let me know if you live else where in the UK and would like to meet up, I’ll definently keep that in mind next time I am out of london too