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New Chase Coalition ACTION NEEDED

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
I just heard from the Director of the Marfan Assoc. He is delighted at the idea of a coalition, and said he sees a good fit between the groups I mentioned (Marfan, Rett syndrome, WPI and CFIDS). He says he has emailed each group to try to make it a more official alliance, asking each group to contact their members to vote.
I notice that the CFIDS Assoc removed my Facebook post, but they have posted the Marfan url, and also posted on the Marfan page. Presumably that's an indication that they will be agreeable as well.
Given that there is little time, he asked if we would just go ahead and presume all will agree and do their share in generating votes. Could this be put on the action list? We could get there yet!!!!
Marfan http://bit.ly/jFw0Q4
Rett Syndrome http://bit.ly/fcnRBp...
CFIDS http://t.co/VZEd5Pk
WPI http://t.co/Ev8j2dP
Anyone with a vote left over, please help. I think this is our best hope to get the 1500 votes we need to get to 5th place and earn another $100,000
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Great stuff, Helen - I just used my fifth vote for the Marfan charity and posted the following message on their page, which anyone is welcome to copy/adapt and paste:

**************

Hi - I just voted for your very worthwhile charity, having heard that the director of the Marfan Foundation approves an alliance between you and other health charities including two that support research into ME/CFS, a disease that has disabled me for the past 25 years. I hope you Marfan supporters will support us in turn in the Chase Contest, on:

WPI http://t.co/Ev8j2dP
CFIDS http://t.co/VZEd5Pk

A Rett Syndrome charity is also in this informal alliance:
Rett Syndrome http://bit.ly/fcnRBp...

Good luck to us all in the contest!

**************
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
Thank you so much, Helen.

Because I am not in the position to ask others to vote via Facebook (limited social network, and among those people lack of sympathy), I am glad to have the opportunity to help out a little more by casting votes for the Marfan and Rett organizations.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I can see from the comments that the WPI have already got some votes from Marfan supporters and Marfan is getting votes from WPI supporters - it's working! Well done, Helen!
 

Dolphin

Senior Member
Messages
17,567
Great stuff, Helen - I just used my fifth vote for the Marfan charity and posted the following message on their page, which anyone is welcome to copy/adapt and paste:

**************

Hi - I just voted for your very worthwhile charity, having heard that the director of the Marfan Foundation approves an alliance between you and other health charities including two that support research into ME/CFS, a disease that has disabled me for the past 25 years. I hope you Marfan supporters will support us in turn in the Chase Contest, on:

WPI http://t.co/Ev8j2dP
CFIDS http://t.co/VZEd5Pk

A Rett Syndrome charity is also in this informal alliance:
Rett Syndrome http://bit.ly/fcnRBp

Good luck to us all in the contest!

**************
Great work, Helen. I just voted for both using Sasha's wording.

ETA: Oops! That wording isn't suitable for the Rett Syndrome group. I said:
Hi - I just voted for your very worthwhile charity, having heard that there is an informal alliance between the International Rett Syndrome, two other health charities including two that support research into ME/CFS, a disease that has left me housebound for nearly 17 years, and the Marfan Foundation. I hope Rett Syndrome supporters will support us in turn in the Chase Contest, on:

WPI http://t.co/Ev8j2dP
CFIDS http://t.co/VZEd5Pk

Marfan Foundation: http://bit.ly/jsoJn7

Good luck to us all in the contest!
Also, Sasha has a bit about the length of her illness, as I have that people should alter as appropriate.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
every one of the 4 groups is up about 300 votes since I recorded them last night. WE ROCK!!! Now we just have to advertise. any ideas??

I just posted about it by commenting on Mindy Kitei's CFS Central blog. She has a post on the Chase contest.
 

OneWaySurvival

Senior Member
Messages
115
Location
USA
Helen, this is fantastic. Marfan and Rett's are great causes to vote for, and I hope they feel the same about us. I voted for both and asked them to help us too, on their Chase giving page comments.

Here's an idea how to recruit more votes from Marfan and Rett's. They surely have forums similar to Phoenix Rising. Can some of us go there and share Helen's idea and Sasha's wording about the benefit of this alliance? I think we'll find some fired-up people there who can jump on board for ME/CFS. If anybody has success with this approach, please post here!
 

Dolphin

Senior Member
Messages
17,567
Everyone who votes for another group needs to write in their box or we don't get credit for it. You can only write in the box if you have voted for them.

Nielk, I don't see anything in the Marfan and Rett Syndrome boxes from you.

Actually, that reminds me, if you voted for a group in round 1, I think you can write in their box ...
 

Nielk

Senior Member
Messages
6,970
Everyone who votes for another group needs to write in their box or we don't get credit for it. You can only write in the box if you have voted for them.

Nielk, I don't see anything in the Marfan and Rett Syndrome boxes from you.

Actually, that reminds me, if you voted for a group in round 1, I think you can write in their box ...

Dolphin,
It's good you told me about it. I went back and checked and the comment did not appear so I commented now and it's there.
Just look for the last comment by GK
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Helen, this is fantastic. Marfan and Rett's are great causes to vote for, and I hope they feel the same about us. I voted for both and asked them to help us too, on their Chase giving page comments.

Here's an idea how to recruit more votes from Marfan and Rett's. They surely have forums similar to Phoenix Rising. Can some of us go there and share Helen's idea and Sasha's wording about the benefit of this alliance? I think we'll find some fired-up people there who can jump on board for ME/CFS. If anybody has success with this approach, please post here!

I just posted on a UK Marfan site: http://forum.marfan-forum.org.uk/viewtopic.php?p=15417#15417

I see OneWaySurvival just beat me to it on a US one!
 

OneWaySurvival

Senior Member
Messages
115
Location
USA
OK, I found this Marfan forum, signed up, and published an entry. I hope it's a somewhat active forum! I'm going to try to look for a few more for Marfan and Rett's and post similar messages.

Check it out:
http://nmfconnect.marfan.org/profiles/blog/list

Idea to get more votes for Chase Giving Contest
Posted by OneWaySurvival on May 23, 2011 at 4:14pm

Urgent Message to the Marfan Community,


The ME/CFS community wants to help you get more votes. I have been sick and disabled from a neuroimmune disease called ME/CFS for 3 years.


I just voted for your cause, and many others in the ME/CFS community are doing the same.


There are only 2 days left of voting, and both our orgs. (Whittemore Peterson Institute and Marfan) have a good chance to get $100,000 or more. This morning (Monday, May 23), many of us with ME/CFS are talking on our own forums about the need to work together with both Marfan and Rett's to move these groups to the top of the list that are finding cures for sick people.


Someone named Helen in our community heard from the Director of the Marfan Assoc. this morning. Here is a report from their connection:

He is delighted at the idea of a coalition, and said he sees a good fit between the groups I mentioned (Marfan, Rett syndrome, Whittemore Peterson Institute and CFIDS). He says he has emailed each group to try to make it a more official alliance, asking each group to contact their members to vote.


We all get 5 votes. Please consider voting for these important causes!

Marfan http://bit.ly/jFw0Q4
Whittemore Peterson Institute (WPI) http://t.co/Ev8j2dP
Rett Syndrome http://bit.ly/fcnRBp...
CFIDS http://t.co/VZEd5Pk
Anyone with a vote left over, please help. Thank you!
 

Dolphin

Senior Member
Messages
17,567
I just posted on a UK Marfan site: http://forum.marfan-forum.org.uk/viewtopic.php?p=15417#15417

I see OneWaySurvival just beat me to it on a US one!
:Sign Good Job: Keep it up. I think Facebook groups would be slightly preferable as they'd have a higher percentage of Chase FB voters perhaps; however maybe the absolute numbers on another forum would be bigger. There might be lots of them around like there are lots ME/CFS FB groups. Anyway, any forum, FB or not FB, is good.
 

shannah

Senior Member
Messages
1,429
OK - I just voted for them and posted on their boards. All 5 of my votes have been cast.

The local Fibro group just sent out an email to their entire group asking for votes for us. Unfortunately, the two local ME groups never got back to me (?????)
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
This is tremendous, but we also need to be working on the RettSyndrome page. I see on their Facebook page here http://www.facebook.com/RettSyndrome?sk=wall they aren't mentioning us at all, only that they made an alliance with Marfan this morning, and are encouraging them to vote. CFIDS deleted my wall post this morning, and seem only to be advocating for themselves and Marfan. I know that the director of Marfan emailed WPI and CFIDS today- I hope we aren't dropping the ball by not responding quickly enough, or by not officially contacting the 2 other groups
If the coalition turns out to be a series of partnerships between Marfan and and the other 3 groups, we,ve lost a great opportunity. Does anyone have a contact at WPI who can see about making this official with Rett Syndrome and/or CFIDS before we miss our chance?