Money for CFS research via Pepsi Refresh project

[Frank]

We are still in pursuit of people and ideas for the pepsi refresh project. Don't let this chances go by, please. So US citizens and people with good ideas contact me or post it here.

 

[justinreilly]

We can (and I think should) start with more than one idea per month (the practical limit is 10 as it looks to me like each person gets 10 votes per day). We can recycle the ideas every month if it is worth it.

I would like to start with WPI certainly. I have emailed Dr. Judy to see if she can give us some discreet projects to fund- for example the funding grants submitted to NIH, all of which were turned down.

We can also include CAA and PANDORA and as many other orgs with good funding ideas as possible- ideally 10 separate orgs to get the max # of votes. Each of these orgs, and us of course, could try to get as many of their contacts to vote every day for the whole "slate" of up to 10 ideas. Maybe we could also cross over into fibro, mitochondrial disease or other related diseases so we get the max # of people voting on the slate. I will contact CAA and PANDORA also.

Anyone have some good ideas of orgs with a lot of contacts who could vote for us (and that have good projects to fund of course)? The voters and ideas need to be in the 50 US states or DC.

BTW- emailed pepsi refresh asking if they could tell us how many votes it has taken in the past to get the different levels of funding, but they said they don't reveal that info.

If we can get 10 ideas/orgs, I'd say start with something like:
zero @$250K (only two grants per month are made at this level so this seems unlikely to be worth the effort and opportunity cost at least in the first month)
three @$50K
four @$25K and
three @$5K
and see what happens and then we could adjust the funding level requests for the next month.

 

[justinreilly]

I'm sure it's pretty competitive so it would probably be good to enlist a few orgs that are a little less related, but can get us more votes because they're bigger and have more contacts, say the American Heart Association (cardiac disease is very common (and is ubiquitous according to Paul Cheney) in ME), the diabetes assn (is it ADA?), maybe American Lung Assn and Red Cross because they're so big.

Any other ideas, feedback? Anyone have contacts at other orgs??

 

[justinreilly]

I think we'd really need some software 'hack' or 'wizard' to make it easy for people to vote. Asking people to go in every day and individually vote for each idea is not going to work. (I don't know if this would comport with their rules; something to look into) Does someone know how get this software and get it set up? I will ask CAA since they have a good 'wizard' they use for advocacy emailing.

 

[frenchtulip]

Voting for 10 daily

I love the idea of having up to ten ME/CFS projects to vote for each day. It might not be too hard to vote for that many if we go directly to the health projects or perhaps do a search. I intend to make daily voting a priority for my energy.

 

[Dolphin]

I love the idea of having up to ten ME/CFS projects to vote for each day. It might not be too hard to vote for that many if we go directly to the health projects or perhaps do a search. I intend to make daily voting a priority for my energy.

Of course, somebody wouldn't have to vote daily for it to work. It just means whenever they get around to voting again, they get to vote 10 times. Can this be introduced for other sorts of votes?

 

[justinreilly]

Can someone else spearhead this? I don't have the time and i don't want to focus myself in fundraising. I'm just trying to get some momentum.

Of course, somebody wouldn't have to vote daily for it to work. It just means whenever they get around to voting again, they get to vote 10 times. Can this be introduced for other sorts of votes?

Actually, each person is allowed to place one vote for up to ten different grants each day.

I reviewed the fine print (below) and it looks like we are ok to use a voting wizard/ widget. We still need someone who knows how to set one up.

Sponsor may allow various off-site methods of voting for an Application, including but not limited to mobile, widgets, media (by way of example and not by way of limitation, voting through a cell phone). Sponsor recommends that before a Voter or Participant chooses an Application to vote on, they visit the Website and review the Profile of the Participant for that Application to get more information about the Participant and their Application.

 

[Dolphin]

Actually, each person is allowed to place one vote for up to ten different grants each day.

Yes, my point was that people don't have to vote every day. Pretty obvious but sometimes people can pick things up incorrectly so wanted to make that clear to everyone.

Best of luck.

 

[lululowry]

If the WPI could be the grantee, we could vote each day and keep it simple. Just a thought.

 

[Frank]

Yes lulu, i myself can't register anything as i'm not a US resident

 

[lululowry]

I am - has anyone registered WPI yet?

 

[Frank]

lulu first you need to figure out a project, you could contact WPI.

 

[frenchtulip]

Anyone submitting a project?

Is anyone planning to submit an ME/CFS project?

 

[Frank]

not that i heard of

 

[citybug]

Today is the last day for this month. I don't see any lyme, cfs. I suggest search for autism and vote for that list today. One is for an online concert. XMRV may wind up in educational materials. Then we can work on one for next month for MECFS.

 

[citybug]

I asked on WPI facebook page for projects to fund. I hope they add some or we could put gene sequencing (small)and general support of research and testing of xmrv in cfs, lyme autism gws, cancer (big grant) . The entry form was down. I'll be away this week or would enter.

 

[Frank]

kdp you'll be a hero if you get that done. I will give everything to collect votes.

 

[frenchtulip]

How about Phoenix Rising?

How about submitting Phoenix Rising as a worthwhile cause that could use some of the Pepsi money?

 

[Frank]

you have to have a project with a certain time span i believe, also you have to be non-profit, which i think Cort says we will become in the future. So i don't think that's possible at this point in time.

 

[Cort]

I think we'd really need some software 'hack' or 'wizard' to make it easy for people to vote. Asking people to go in every day and individually vote for each idea is not going to work. (I don't know if this would comport with their rules; something to look into) Does someone know how get this software and get it set up? I will ask CAA since they have a good 'wizard' they use for advocacy emailing.

Justin, think about this a minute. Your signature says BOYCOTT CAA in big bold letters...I don't think you're going to get very far with them....