Want to help with fundraiser at Auction?

Hello. I have a CNS AVM near brainstem. Endovascular procedures have evolved with marginal success. . I have three pages of life altering symptoms; this thing has reached not just my mind, but the very cells nucleus from my feet to my top of head! Social, physical, spiritual, smells, sounds, you name it.

Anyhow, HERE IS GREAT NEWS that can help our cause! I have the opportunity to hold yearly auction in Idaho selling Snowmobiles, Atvs, and motorbikes. It is Oct. 31st this year. I will be the Auctioneer (ear plugs of course) and be running much of the event. Last year, I really wanted an AVM awarenss corner set up with a place for donations to go to NINDS foundation,but then thought …
(I just edited this, as new info been found…read on!

Hi Blake,

I have read this request more than once. I wish I could come, but money and a prior obligation get in the way.

I’m tempted to try and take a crack at constructing a display board, but I would have to know what group would actually be receiving the donations. My general concept is that it could be a joint display if an organization other than the AVM Survivors Network would be receiving the money. In the middle would be something to the effect of “AVM Survivors Network supports (name of other organization).” On one side would be information about the AVM Survivors Network on one side and information concerning the agency being supported on the other.

What also might be helpful would be to have brochures describing the AVM Survivors Network and/or the other agency that you would be supporting. I remember that there was a request for someone to create a brochure for the AVM Survivors Network. There were volunteers, but I v=never heard if one was created.

You also might try contacting Kim (Jaclyn’s Mom) to see if you could get some of the TAAF bracelets she and Jaclyn have been selling for your event.

Good luck with everything.

Debbie

Debbie,
I appreciate your response. You would have great ideas I’m sure for a display. I would love to build one, but have been spending all waking minutes with other aspects of the event. If my wife (secretary for the Auction) can, and no one else wants to, she will try to make something. As far as brochures, unless it was donated, I don’t think we could afford to print them. Love the idea of “AVM Survivors network supports…” I have been in contact with both the National Institute of Neurological Disorders (NINDS) and National Organization for Rare Diseases (NORDS).

If there is no account set up for funding our little network, then NORDS is the place we would want to support. In fact, this year the focus has been on five major rare diseases, and Arteriovenous Malformations of the Spine and Brain is the number one listed. While our donations may be small, the awareness alone would pay big and hopefully help those in charge see their is group out there doing what they can, and would really like to see more study on AVM’s. Anyone can donate via on line through the “donate now” option. You can put it where you want the funding to go.

We can actually set this up ourselves, and collect then donate it ourselves, and so forth; but if would perhaps be more effective to have our network be part of it. Plus, it will hopefully be something that can help the individuals here on the network. So, if anyone wants to be part of it, here is an opportunity to step up, step out, and make a difference. If not, my wife and I will do what we can with the little time we have (we live two and half hours from the Auction, I have been there 2 times a week hauling inventory, setting up, advertising, etc…) Right now, the news plans to be there. Two years ago, they did a super job. Last year, they did not show up…so hopefully they won’t ditch us again. When they catch wind about the AVM awareness (I have not told them yet because we have been a little uncertain if we can put it together) I think they will put it priority. I did just put in two front page ads in Western Wyoming Penny Pincher to advertise for the Auction, and it explains donations accepted for AVMs; a vascular disease (go to NORDS). It will come out this Thursday, and run two weeks.

So it is certain we are doing something, it would just be nice to have something GREAT. And with a little networking, I think it can be great, on the news, and something neat we can do year after year. I know I am glad to be here still, and would like to pay back something. I will be the first to donate!

Debbie Considine said:

Hi Blake,


I have read this request more than once. I wish I could come, but money and a prior obligation get in the way.



I’m tempted to try and take a crack at constructing a display board, but I would have to know what group would actually be receiving the donations. My general concept is that it could be a joint display if an organization other than the AVM Survivors Network would be receiving the money. In the middle would be something to the effect of “AVM Survivors Network supports (name of other organization).” On one side would be information about the AVM Survivors Network on one side and information concerning the agency being supported on the other.



What also might be helpful would be to have brochures describing the AVM Survivors Network and/or the other agency that you would be supporting. I remember that there was a request for someone to create a brochure for the AVM Survivors Network. There were volunteers, but I v=never heard if one was created.



You also might try contacting Kim (Jaclyn’s Mom) to see if you could get some of the TAAF bracelets she and Jaclyn have been selling for your event.



Good luck with everything.



Debbie

Hi Blake,

Glad you are going ahead and doing something. I had read about NORDS before and think it’s a great organization. NORDS also supports persons with autism, and my daughter’s oldest half-brother is autistic.

Since I can’t be there, I would like to send you a money order for NORDS if that’s all right. The donation will be small, but it’s something I’d like to do.

Good luck with everything.

Take care,

Debbie

Blake Angell said:

Debbie,
I appreciate your response. You would have great ideas I’m sure for a display. I would love to build one, but have been spending all waking minutes with other aspects of the event. If my wife (secretary for the Auction) can, and no one else wants to, she will try to make something. As far as brochures, unless it was donated, I don’t think we could afford to print them. Love the idea of “AVM Survivors network supports…” I have been in contact with both the National Institute of Neurological Disorders (NINDS) and National Organization for Rare Diseases (NORDS).

If there is no account set up for funding our little network, then NORDS is the place we would want to support. In fact, this year the focus has been on five major rare diseases, and Arteriovenous Malformations of the Spine and Brain is the number one listed. While our donations may be small, the awareness alone would pay big and hopefully help those in charge see their is group out there doing what they can, and would really like to see more study on AVM’s. Anyone can donate via on line through the “donate now” option. You can put it where you want the funding to go.

We can actually set this up ourselves, and collect then donate it ourselves, and so forth; but if would perhaps be more effective to have our network be part of it. Plus, it will hopefully be something that can help the individuals here on the network. So, if anyone wants to be part of it, here is an opportunity to step up, step out, and make a difference. If not, my wife and I will do what we can with the little time we have (we live two and half hours from the Auction, I have been there 2 times a week hauling inventory, setting up, advertising, etc…) Right now, the news plans to be there. Two years ago, they did a super job. Last year, they did not show up…so hopefully they won’t ditch us again. When they catch wind about the AVM awareness (I have not told them yet because we have been a little uncertain if we can put it together) I think they will put it priority. I did just put in two front page ads in Western Wyoming Penny Pincher to advertise for the Auction, and it explains donations accepted for AVMs; a vascular disease (go to NORDS). It will come out this Thursday, and run two weeks.

So it is certain we are doing something, it would just be nice to have something GREAT. And with a little networking, I think it can be great, on the news, and something neat we can do year after year. I know I am glad to be here still, and would like to pay back something. I will be the first to donate!



Debbie Considine said:
Hi Blake,

I have read this request more than once. I wish I could come, but money and a prior obligation get in the way.

I’m tempted to try and take a crack at constructing a display board, but I would have to know what group would actually be receiving the donations. My general concept is that it could be a joint display if an organization other than the AVM Survivors Network would be receiving the money. In the middle would be something to the effect of “AVM Survivors Network supports (name of other organization).” On one side would be information about the AVM Survivors Network on one side and information concerning the agency being supported on the other.

What also might be helpful would be to have brochures describing the AVM Survivors Network and/or the other agency that you would be supporting. I remember that there was a request for someone to create a brochure for the AVM Survivors Network. There were volunteers, but I v=never heard if one was created.

You also might try contacting Kim (Jaclyn’s Mom) to see if you could get some of the TAAF bracelets she and Jaclyn have been selling for your event.

Good luck with everything.

Debbie

Debbie, got the your reply today. Would you still be interested in the construction a display board perhaps even putting your donation towards costs involved in creating it? We have not heard anyone yet say they could do this, but it would be very nice for someone to volunteer. I’m no good at that sort of thing (and no time), and between my wife’s involvement with the Auction and tending to six children (under age 10) she is committed, but we will sure do SOMETHING, though probably not as nice as someone else…Any one else reading this that may have something already created that could be used, and modified slightly…

Debbie Considine said:

Hi Blake,


Glad you are going ahead and doing something. I had read about NORDS before and think it’s a great organization. NORDS also supports persons with autism, and my daughter’s oldest half-brother is autistic.



Since I can’t be there, I would like to send you a money order for NORDS if that’s all right. The donation will be small, but it’s something I’d like to do.



Good luck with everything.



Take care,



Debbie



Blake Angell said:
Debbie,
I appreciate your response. You would have great ideas I’m sure for a display. I would love to build one, but have been spending all waking minutes with other aspects of the event. If my wife (secretary for the Auction) can, and no one else wants to, she will try to make something. As far as brochures, unless it was donated, I don’t think we could afford to print them. Love the idea of “AVM Survivors network supports…” I have been in contact with both the National Institute of Neurological Disorders (NINDS) and National Organization for Rare Diseases (NORDS).

If there is no account set up for funding our little network, then NORDS is the place we would want to support. In fact, this year the focus has been on five major rare diseases, and Arteriovenous Malformations of the Spine and Brain is the number one listed. While our donations may be small, the awareness alone would pay big and hopefully help those in charge see their is group out there doing what they can, and would really like to see more study on AVM’s. Anyone can donate via on line through the “donate now” option. You can put it where you want the funding to go.

We can actually set this up ourselves, and collect then donate it ourselves, and so forth; but if would perhaps be more effective to have our network be part of it. Plus, it will hopefully be something that can help the individuals here on the network. So, if anyone wants to be part of it, here is an opportunity to step up, step out, and make a difference. If not, my wife and I will do what we can with the little time we have (we live two and half hours from the Auction, I have been there 2 times a week hauling inventory, setting up, advertising, etc…) Right now, the news plans to be there. Two years ago, they did a super job. Last year, they did not show up…so hopefully they won’t ditch us again. When they catch wind about the AVM awareness (I have not told them yet because we have been a little uncertain if we can put it together) I think they will put it priority. I did just put in two front page ads in Western Wyoming Penny Pincher to advertise for the Auction, and it explains donations accepted for AVMs; a vascular disease (go to NORDS). It will come out this Thursday, and run two weeks.

So it is certain we are doing something, it would just be nice to have something GREAT. And with a little networking, I think it can be great, on the news, and something neat we can do year after year. I know I am glad to be here still, and would like to pay back something. I will be the first to donate!



Debbie Considine said:
Hi Blake,

I have read this request more than once. I wish I could come, but money and a prior obligation get in the way.

I’m tempted to try and take a crack at constructing a display board, but I would have to know what group would actually be receiving the donations. My general concept is that it could be a joint display if an organization other than the AVM Survivors Network would be receiving the money. In the middle would be something to the effect of “AVM Survivors Network supports (name of other organization).” On one side would be information about the AVM Survivors Network on one side and information concerning the agency being supported on the other.

What also might be helpful would be to have brochures describing the AVM Survivors Network and/or the other agency that you would be supporting. I remember that there was a request for someone to create a brochure for the AVM Survivors Network. There were volunteers, but I v=never heard if one was created.

You also might try contacting Kim (Jaclyn’s Mom) to see if you could get some of the TAAF bracelets she and Jaclyn have been selling for your event.

Good luck with everything.

Debbie