New Chase Coalition ACTION NEEDED

[helen41]

I am going to post vote numbers as a gift from WPI on the Facebook page of Rett to try to attract some interest. I don't know what else to do

 

[Dolphin]

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?

Thanks Helen. Following your message, I just posted this on the wall of the International Rett Syndrome FB group:

(You can see this message in the IRSF voting box)
Hi - I just voted for your very worthwhile charity in Chase Community Giving, 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:

Whittemore Peterson Institute for Neuro-Immune Disease (WPI) http://t.co/Ev8j2dP
CFIDS Association of America (CAA) http://t.co/VZEd5Pk

...Marfan Foundation: http://www.facebook.com/l.php?u=http://bit.ly/jsoJn7&h=9a067

Good luck to us all in the contest!

I was going to highlight this on other ME/CFS and neuro-immune e.g. Fibromyalgia groups. However, I would like to see some votes from the Rett Syndrome community in the voting boxes of the WPI and/or CAA first. Thank you.

If people want to "like" it on: http://www.facebook.com/RettSyndrome?sk=wall it might draw some attention to it and show that there are a few of us (at least) watching them. Of course, other messages might show that better.

 

[OneWaySurvival]

I just posted this on the wall of the International Rett Syndrome FB group: [see above]


If people want to "like" it on: http://www.facebook.com/RettSyndrome?sk=wall it might draw some attention to it and show that there are a few of us (at least) watching them. Of course, other messages might show that better.

Great idea, Dolphin. Thanks for the link to their official Facebook page so we can add comments too. I think Helen is right, we need to act quickly to get this alliance off the ground! I think it's important to ask Rett voters to leave us a comment letting us know they're helping us so more of us will be motivated to help them. One of their recent comments on their Facebook wall says they are really concerned about dropping to 13th. Well, WPI voters can help. And if they have a vote to spare, maybe they can share with CAA too, but since they're already uniting with Marfan, I'm putting first priority on WPI, then CAA next.

Helen, if you're posting "gift numbers" from WPI, go ahead and count my vote. I'm not sure how you'd keep track...maybe a poll? But that wouldn't reflect friends of friends, or silent voters, but it's a start. I'd be really encouraged if I saw a single person from Rett vote for us. Then we could get it rolling.

 

[helen41]

because I'm a contester, when people vote my requests, they post what # vote it was to show they really did do it. I just copied down what was generated today and put it on their wall. I now notice that Marfan has CFIDS on their wall as an ally, but still nothing from WPI. I think Marfan is being really smart here by taking the initiative. Does anyone know who to contact at WPI to try to move things along?

 

[Dolphin]

because I'm a contester, when people vote my requests, they post what # vote it was to show they really did do it. I just copied down what was generated today and put it on their wall.

Will try to remember about the # thing again. I have one vote yet and might still use it.

 

[Dolphin]

The National Marfan Foundation have just put this up:
The NMF is Joining Forces with Other Health-related Charities in Chase Community Giving
http://www.facebook.com/RettSyndrom...harities-in-chase-community/10150191689118740 :victory:

 

[OneWaySurvival]

The National Marfan Foundation have just put this up:
The NMF is Joining Forces with Other Health-related Charities in Chase Community Giving
http://www.facebook.com/RettSyndrom...harities-in-chase-community/10150191689118740 :victory:

Cool. They included WPI at the end! (finally!) Now maybe we'll see something similar with Rett? I hope?

I agree with Helen that it would be good to get something formal from WPI too between these 2 groups (worth a try if someone can contact WPI/Andrea/Annette?), but they've used up 4 of their alliance votes (WPI, CAA, Epilepsy and Vision), and it might be awkward to try to pick only 1 more out of Marfan and Rett. As much as I like the Vision group, it's too bad the WPI didn't align with these bigger vote getters that have more serious health issues like Marfan and Rett. They seem like perfect matches. It doesn't stop the rest of us from doing an informal alliance though, let's keep trying!

 

[Dolphin]

Cool. They included WPI at the end! (finally!) Now maybe we'll see something similar with Rett? I hope?

I agree with Helen that it would be good to get something formal from WPI too between these 2 groups (worth a try if someone can contact WPI/Andrea/Annette?), but they've used up 4 of their alliance votes (WPI, CAA, Epilepsy and Vision), and it might be awkward to try to pick only 1 more out of Marfan and Rett. As much as I like the Vision group, it's too bad the WPI didn't align with these bigger vote getters that have more serious health issues like Marfan and Rett. They seem like perfect matches. It doesn't stop the rest of us from doing an informal alliance though, let's keep trying!

FWIW, I got a spam e-mail from VisionQuest and there was no mention of the WPI.

 

[justinreilly]

Thanks for contacting Marfan and Rhett groups. These alliances are very important. The ideal strategy would have been to get WPI to agree to a 'rotational' strategy where it promoted each of its partners in proportion to their ability to get votes (with their place in the standings as a proxy for this). They could still do this, but it looks like they are not on top of this particular issue of alliances quickly enough (not a criticism, they are busy with lots of things of course).

 

[charityfundraiser]

Helen, the CFIDS Association did not delete your post. It is there. You need to click on "Most Recent" posts to see posts by everyone.

 

[Dolphin]

Rank:
8 WPI
13 Rett
18 Marfan
29 CFIDS
39 MPS

There are these other health charities but maybe too close in rank to CFIDS?
25 Ovarian Cancer
27 Epilepsy
30 Anemia

Yes, they're very close. And that matters not just in terms of us but also if we're asking them to vote - they're less likely to do it with a close competitor, I would think.

 

[Hope123]

For those counting, a friend just voted for the Retts and Marfans groups and posted on their pages for me.

She has a vote left. Which group would you like her to post on?

 

[helen41]

this is on the Marfan FB page
National Marfan Foundation: I spoke to someone at WPI, but they haven't confirmed I went ahead and included them in our notice and in the email we sent out to over 16,000 people. Their voting link is there, even if their logo isn't...

I don't know if we'll make it to $200.000, but it won't be for lack of trying on their part

 

[Boule de feu]

I have one vote left. Tell me what to do.

 

[Dolphin]

Perhaps a group will come begging tomorrow so it doesn't have to be used straight away. We can get people who are good at actually filling in the box (rather than voting for another group but not doing that), it's useful.

 

[OneWaySurvival]

New Vote Getting Strategy

I like the profile pic logo idea, charityfundraiser.

Here is another idea that is suddenly proving very successful in getting "hold out" Facebook friends to vote for ME/CFS. Check out my blog post here for how it works:
http://forums.phoenixrising.me/entr...that-is-suddenly-waking-up-our-friends-to-WPI!

I've been wondering today why more people from the ME/CFS Forum aren't posting strategies here, and vice versa. This seems like a great time to work together. So, I did just go over there and see that they have a wonderful thread titled "How can we help the WPI earn money from the 'Chase Community Giving' program?" Dolphin, I noticed you are a member there and here. If you think my blog entry is helpful, will you post it there on that thread? (sorry to call you out and pressure you like this...I'm just trying to be efficient...I've already worn myself ragged today and feel really sick-which is why I'm not a member of multiple forums, but I think this will all be worth it in a couple days!)

 

[Kate_UK]

What about forums for Gulf War Illness, Lyme, autism?

when you look at the WPI page here for voting,
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo
it says

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions.

so people with those illnesses should be voting too, if they knew about the vote.

 

[Dolphin]

I like the profile pic logo idea, charityfundraiser.

Here is another idea that is suddenly proving very successful in getting "hold out" Facebook friends to vote for ME/CFS. Check out my blog post here for how it works:
http://forums.phoenixrising.me/entr...that-is-suddenly-waking-up-our-friends-to-WPI!

I've been wondering today why more people from the ME/CFS Forum aren't posting strategies here, and vice versa. This seems like a great time to work together. So, I did just go over there and see that they have a wonderful thread titled "How can we help the WPI earn money from the 'Chase Community Giving' program?" Dolphin, I noticed you are a member there and here. If you think my blog entry is helpful, will you post it there on that thread? (sorry to call you out and pressure you like this...I'm just trying to be efficient...I've already worn myself ragged today and feel really sick-which is why I'm not a member of multiple forums, but I think this will all be worth it in a couple days!)

Sorry, would prefer if somebody else would do it for various reasons incl. workload. Maybe justinreilly or somebody else could. Best of luck.