Message from Rebecca Lerner, Digital Marketing Manager, Neurosurgery at Weill Cornell Medicine, NY 10065:
Dear AVM Survivors Network Community,
My name is Rebecca, and I’m reaching out from the Department of Neurological Surgery at Weill Cornell Medicine. We’re hosting a free webinar on Arteriovenous Malformations (AVMs) that may be of interest to your online community.
Dr. Philip E. Stieg, Neurosurgeon-in-Chief at NewYork-Presbyterian/Weill Cornell Medical Center, will be presenting on AVM diagnosis, treatment approaches, and recent advances in the field. This will be an excellent opportunity for patients, survivors, and families to learn directly from a leading expert and ask questions.
Webinar Information:
Date: Thursday, December 4, 2025
Time: 12:00 Midday, Eastern
Format: Live via Zoom with Q&A
Cost: Free (registration required)
Register here:
The registration form requests name and email details along with the opportunity to ask a couple of questions for the session. Rebecca has informed us that the Zoom “account holder” is Weill Cornell Medicine. She advises that the information in the registration will be used only to provide the webinar details and to send out a recording of the session afterwards. Emails and names are only collected for these purposes.
Rebecca encouraged anyone who prefers to remain somewhat anonymous to use any name in the name fields, albeit your email address may disclose some of your identity.
We hope that sharing the details of this session may be helpful to the community.
I assume it will be accessible all around the planet. It is 5pm UK time. I’ve got a mad, mad day on the day, so I may well not be able to attend but if I register, I should get a recording and registration allows us to ask any questions (which might be addressed during the session) so I think I’ll register even if I can’t make the session.
I need to think of my questions!
I’ll just follow up with Rebecca regarding the date because 4 Dec is Thursday not Wednesday as she wrote. I’ll let people know. Select “watching” below so that you get any further replies.
I completely missed this post and hence the webinar. Is there any chance it was recorded and posted online, or able to get a recording of it from somewhere?
@Suraya that’s a good prompt. I did ask last week, I think, and got no response that I remember. I will follow up.
I’m busy moving my mum into a care home at the moment (she moved in a week ago) and getting her settled plus all of the other aspects of change are keeping me away from here, so I apologise for being rather absent at the moment.
There may be ways to download videos on YouTube but I use my phone to access these things and there aren’t always the same facilities on a phone as on a desktop or laptop computer, so I can’t see how to do it on my phone.
Mum is settling a lot more into her new home and I had a very helpful conversation with the home manager yesterday about the financial obligations of a care home: it’s big bucks and some of the things they want you to sign up to are horrifying. However, yesterday’s conversation went much better than I was anticipating.
Thanks Richard! I also only use my phone so just saved the link.
I appreciate you sharing the video with us. I didn’t realise there were some things I didn’t even know.
My husband wanted to watch it so I’ve forwarded it to him. Don’t really have any faith it’s going to change anything (after my rant ).
On my side, I’ve developed a micro bleed, but just dealing with it at home as I usually do and trying to push myself also to move around to see if I can do it (I should be able to since I drove myself when I had a hemorrhage), but want to see if there will be any consequences other than fatigue. Trying new ways so that I can be more present with my kids in these times, but I only get out of bed at meal times because I do listen to my body.
I can only imagine the cost of a care facility, but glad to hear she’s settling in well and that you had a positive interaction with the manager. Hopefully this will give you some peace of mind as well.
Nice care home places in Leicestershire cost about £1500 a week plus extras, so podiatry, hairdressing and toiletries are extra. If mum gets to the stage of needing 1:1 care, the costs will go up further.
The Care Act 2014, I think it is, provides for residents to have a personal allowance of up to ~£30 a week above these costs and they are allowed to buy Christmas presents and birthday presents at a rate similar to past years but any expenditure over and above that can be challenged by the local council as “willful impoverishment”. Once a person’s funds run down to £23,250, the council are obliged to pay for care but Leicestershire limit their contribution currently to ~£890 a week.
At the moment, the written agreement with the care home obliges me to pay the difference, though the care home manager is telling me that “normal people can’t afford to do that: you’ll only be obliged to act as her power of attorney [and ensure funds from mum’s estate are used], not pay the ‘top up’” out of my own pocket. So I’m currently arguing this point with the care home’s finance team. I’m retired myself; I cannot take on an extra £31k outgoings + extras when mum’s funds get down to the limit. As the care home manager says, normal people can’t do this. I haven’t signed the guarantor section of the agreement, since I can very much read a contract and understand what it says! If they do oblige me to sign it, she will have to move to a cheaper, much more basic, much less pleasant care home at about the point the money runs out.
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