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The CAA: Defense for the Sake of Defense

Discussion in 'Action Alerts and Advocacy' started by mojoey, Oct 10, 2010.

  1. caledonia

    caledonia

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    The website shouldn't cost a bazillion dollars to revamp. My suggestion would be to convert it from a static HTML site to a content management system, like Drupal or Wordpress. There are many plug-ins for both, so you can customize it to your needs.

    The advantage of a content management system (CMS) is the site can become interactive with visitor comments if you choose. The look of the site is based on a template, so you can change the template any time, and all the pages will change. You can change menus at any time and all the links will update automatically.

    The site management is browser based, so you don't need special software and you can make changes to the website from any computer connected to the internet. Once it's set up, you don't need to be a website guru to maintain it.

    I've done sites in html (Dreamweaver), Drupal, Joomla, and Wordpress. My favorite CMS for simplicity and ease of use is Wordpress, especially if you start with a theme framework, such as Headway, Builder, or Ashford.

    I would suggest reading Poor Richard's Website Marketing Makeover by Marcia Yudkin for ideas on how to set up the navigation of the site. It's kind of outdated technology wise, but the basic principals are timeless.

    What I would do to your website is to clean up the home page. It's way too cluttered with too many overlapping menus, links, buttons. Way confusing. The rest of the website is actually not too bad. You could use breadcrumbs so you don't get lost on the site though. I would also suggest adding a message board, so you can get some sort of community started.

    My other suggestion would be to get someone to donate their services or to give you a reduced rate to get it set up, then you should be able to maintain it yourselves.

    As far as a survey of your members - again, it doesn't have to cost a million dollars. It would be as easy as including a survey on one page of your newsletter/magazine, with a return address on the backside, so members could mail it back in, or putting a member survey on your website. Or both. You already have a newsletter and website, so the survey would be free.

    Do you even know how many of your members are on the net or not? How much could you save on printing and mailing costs if you went digital? Are you putting together the newsletter in-house, or paying a designer to do it? Not that I want to take away work from designers, but in-house is going to be a lot cheaper.
  2. illsince1977

    illsince1977 A shadow of my former self

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    CAA website is an indispensable tool in the arsenal of education & awareness

    I was simply referring to the above breakdowns where a very high percentage of your budget is allocated to education and awareness. I think it's a disingenuous deflection to turn around and ask me for specifics. You bureacrats can try to bog every question down in specifics of what dollars from which pot were included in this outlay. I'm not having an accounting discussion here. I don't want to quibble about fund sources.

    The vast majority of your budget is for education and public outreach. If the website is not included as a tool for fulfilling that mission, then why do you have it up on the net? And since you have it, why would you leave misinfortmation up there for years? This is your public face.You don't want it to be a source of misinformation.

    The website doesn't have to be expensive and complex. Make the design simple and modular enough and maybe it will even lend itself to crowd sourcing to aid in correcring mistakes or actually correcting them. Keep the objective in mind of imparting information, not including every latest technical bell and whistle, just the most up to date information.

    So if you're planning a massive rewrite of the website, how do you intend to fund it? Why was it not part of a budget for public awareness and provider education? How do you make the public aware? I can't imagine you never refer people whose awareness you are raising to your site. It's supposed to be a tool to backup and support and reinforce your discussions with people. It should be designed accessibly to capture the broadest audience possible, and flexibly to modify old data with new data as it is learned, not years later.

    Cort developed the PR website and the forum. I'd hazard a guess that he did it on his own for the most part. Did you, Cort? Or did you have a whole staff at your disposal, or a contract webdesigner/guru at your disposal?

    Please don't confuse the discussion with buzzwords of information/website architecture/design. You're talking to a former programmer. Because the CAA represents a patient group, i think it should be accessible to the blind. Usually that can be done best with simple HTML text based webpages. That's how the WWW started. Simple text pages published so everyone who had access to the internet, including the visually impaired through print to speech readers.

    Fancy graphics don't enhance the information imparted on a web page, they just make it look prettier. That doesn't mean pictures for educational purposes can't be included.

    The ability to keep information current should be an immutible part of the specifications for the new design. Then if members point out any errors they can be corrected, instead of the CAA pleading they are impossible to correct because the whole site requires redesign to remove/correct an outdated piece of information.

    SO, KEEP IT ACCESSIBLE, MODULAR, FLEXIBLE, MODIFIABLE AND SIMPLE. And maybe that will make it cheaper! and better!
  3. Roy S

    Roy S former DC ME/CFS lobbyist

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    The underlying issue is the ineffectiveness of the CAA over the last 20 years and into the future.

    My view is from 40 years as a patient, and in advocacy and lobbying since the late 1980s. I worked closely with the CAA for years and was one of its strongest supporters. Like so many others I no longer am a fan for more reasons than I want to spend time writing about.

    I learned all I could from the two previous CFS lobbyists and the one after me, and also put a lot of effort into learning about AIDS advocacy and some efforts for other illnesses. The CAA shouldn't be ACT UP, but other illness groups have made great progress without having an ACT UP equivalent. What we need is a well coordinated campaign, but we don't have adequate leadership. The way Washington advocacy is being done by the CAA I would expect it to do poorly.

    Kim McCleary has been running the CAA for 20 years and a good argument could be made that we've basically made no progress in 20 years. Some good things, some bad things; but overall I don't think we've made progress. Much of the pro-CAA spin is well done but I wish we'd face facts.

    It's hard to believe we still don't even get respect. Even the last few years I've had doctors condescendingly tell me that CFS has a psychological causation.

    That multimillion dollar collaboration with the CDC for awareness can be spun to sound good. Problem is -- it didn't work. Dr. Kenneth Friedman, who is in my opinion one of the more outstanding former members of the CFSAC, has said as much. I think his words were that it was a tremendous waste of money.

    I don't believe any organization in the United States or even the world is not interested in federal policy towards CFS, but the CAA has alienated a lot of people. In my opinion it was unnecessary but it happened and is still happening.

    How about everybody dropping the line about the CAA and the WPI not being in competition. For one thing, there is a very limited amount of donations from most of the same sources. That is competition. It doesn't have to be a bad thing, but I think denying it is silly.

    Through the grapevine I've heard what I think are reliable reports that the WPI has lost serious research grant money in part because of the denigration of the WPI on this forum. As Chris, The Patient Advocate, wrote in a good blog, denigration of the WPI hurts us all. They are new and I'm willing to give them some slack. If they truly screw up I'm confident they will get legitimately criticized for it.
  4. Cort

    Cort Phoenix Rising Founder

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    I agree - CAA is behind the times on website technology. I did PR myself - it was an agonizing and time-consuming process but now there are CMS's and lots of them. Now the PR website is going to be redone in Joomla - it takes some time learning - but the opportunities and ultimately the ease of use are so much greater that its a no-brainer for me and no, with the CAA budget - it's not that expensive. They are simply choosing not to use the money for that.

    I think the money for education reflected the CDC program they were involved with and no longer are. I would be really surprised if its still at those levels.
  5. Sing

    Sing Senior Member

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    Great, Jennie, and thanks for answering so many questions here. We are really throwing it at you, having it out, and hopefully we are getting somewhere through this process.
  6. CBS

    CBS Senior Member

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    Because the funds are so limited, dollars going to one organization are dollars that won't go to the other. No problem with that. It's unfortunate but with a small pie it is probably true. I suggest that we try to grow the pie.

    As for the end of your quote and preceding comments, it could be read that you're suggesting it is OK to criticize the CAA but that criticizing the WPI is out of bounds. I just don't by that either is the case. The like all organizations, the WPI has made mistakes (all on it's own) and it has done some things quite well. I'm also unwilling to over look the good research that the CAA is making happen (see the latest webinar for a sense of how CAA grants are being used as seed money to win much larger sums of federal dollars).

    We're all frustrated but we'll all be better off when there is room for a range of advocacy efforts (there needs to be a range of efforts) and we can set aside the notion of one side being the enemy and the other being saints who are beyond constructive criticism.
  7. Cort

    Cort Phoenix Rising Founder

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    I agree that there is competition for donations - no doubt about that - but that doesn't mean that finding a retrovirus won't help everybody enormously because it will bring enormous attention and money to this disease. Look at the people the CAA nominated to the CFSAC - big names in retrovirology. They couldn't have gotten people of that caliber a year ago.

    As to still not getting respect - I can't believe it either but it's not easy. FM still doesn't get respect even though there are now three drugs approved for it. Check out my blog on the bottom feeders of the NIH - FM, after all the progress they've made, doesn't get any more money per patient for research than CFS does.

    For sure we have a long way to go but suggesting that the research grant funders are denying the WPI grants based on what patients are saying in a patient support forum is untenable in my opinion. A - I hope they are not basing research decisions on what patients are saying (they have a review checklist - I don't think it includes that the patient community is saying) and B) where is all the denigration of the WPI on this Forum? Yes there are critiques at times but 95% of the discussion of the WPI is completely laudatory. If research funding was based on what people on PR were saying about the WPI -I think they would be getting scads of it. They would certainly be getting some.

    I can't imagine that the people who decide the fate of research grants know anything at all about the PR Forums. Find out who's on the CFS SEP panel that reviews grants. You'll see that most of them have don't have any connection to CFS - which is actually one of the problems; they don't know much about the disorder! They don't know enough to know about us.
  8. jspotila

    jspotila Senior Member

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    I agree there are many advantages to a CMS. I know quite a bit about information architecture and web design (very little, though, about graphic design), and redoing the Association's website will need more than a CMS. There is tons of content that needs to be reviewed, revised, archived; additional functionality that may or may not be needed; data security requirements that WordPress can't provide (ask me how I lost my personal blog!). In any event, we can all agree that the website needs fixing. Like I said earlier, I'm personally looking for donated or reduced rate options that will still provide the comprehensiveness and quality we need. If caledonia or anyone else is interested in volunteering your expertise, please PM me!!!!!!
  9. mojoey

    mojoey Senior Member

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    Joseph Chang
    Joseph Chang
    The CFIDS Association of America
    Joseph Chang
  10. mojoey

    mojoey Senior Member

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    Hey Jennifer,

    I think Joseph addressed your response in what I posted above.

  11. mojoey

    mojoey Senior Member

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    Hey Cort,

    I'm glad that the XMRV research is picking up, and I've been waiting for the CAA + GSK study to hit the ground running too. Like you said, time will tell. Retrovirology aside, I think I have a pretty good grasp of those financial points, and I think that they're very relevant to your point about the CAA not having the financial wherewithal to make a difference via research. This summary was posted earlier:

    So in these 3 years, $2.6 was spent on salaries. $4.5 million was spent on education, awareness, and public policy expense. $1.3 million was spent on research "expense", an amount which includes salaries being given out for research! I think grant money is the best measure of what they actually achieved in research, and it totaled 600k. They spent over 4x as much on salaries than they distributed in grants.

    So I do think your point about them being a relatively small organization is true but doesn't explain the low research expenses and grants distributed over the years if you look at what they were actually capable of spending. Also, even if a few million isn't enough to make an earth-shattering difference, that preconception doesn't excuse the CAA from trying with all their might. After all, their mission statement is to stimulate and invest in research.

    Numbers don't tell the whole story, but you can't tell a whole story without the numbers.
  12. Cort

    Cort Phoenix Rising Founder

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    Right, well the CAA should respond to your points. The CAA was receiving money from the CDC for the media campaign, Faces of CFS exhibit and sending a team to research conferences to provide info on CFS until 2008, I believe, which means that money showed up in spades in that time period.. The distorted spending on education relative to research appears to come from the CAA fulfilling the contract on the media campaign which they obviously couldn't decide to devote to research.

    It probably points out, more than anything, how little money the CAA has - and how much is available from the federal govt since even the small media contract may have been sufficient to swamp the CAA's other expenditures next year.

    Remember the CAA only raised 1 million dollars for their research initiative - which makes there 1.3 million figure on grants and salaries over three years not that surprising - although honestly I would think it would be higher ($2,000,000?) since they do raise money for programs every year. Are you sure that 1.3 million is all they spent on research over three years including salaries? Dr. Vernon would not come cheap, the CAA is putting alot of money into their BioBank (each sample is several hundred dollars a pop) and they are building their research network plus they have the grants. It doesn't seem possible they could all of that for only 1.3 million dollars over three years.

    When did the Research Initiative start? Are we including data prior to the time they started focusing more on research in that total?
  13. mojoey

    mojoey Senior Member

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    Hey Cort,

    I went through the figures and found that only $2.4 million during that period was from government contributions, so even if we assume that's the max that they were contracted for, that doesn't account for the other $2.1 mil or so that was spent on education, research, and public policy. That means that even if you account for the govt' contributions, the amount spent on those 2 categories was still 60% more than the amount spent on research.

    Yeah those numbers did include '07-'08 years where the research expense was far lower than '09, but like I said they had plenty of millions during that period that wasn't tied up in gov't contracts, and like you said they've been raising money throughout that time. They could've chosen to spend any part of the $3.8 million in membership dues + donations raised from '07-'09 during that time on research.
  14. Cort

    Cort Phoenix Rising Founder

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    It's good for me to look at this because I have to prepare a 990 for Phoenix Rising (a much smaller one :)).

    If you look at the 2009 report immediately you can see that the CAA spent $650,000 in grants in 2008 but the money was not actually paid out until 2009 - which was apparently why looking at the 2007-2009 period does not reflect the CAA's emphasis on research. However only 370,000 was actually spent on grants (what happened to the other $300,000?). I assume getting into the BioBank was expensive and chewed up some money as did Dr. Vernon's salary. The CAA apparently had still not paid out all their grant money in 2009, though.

    Other 2009 expenses include - 450,000 focused on the Media Campaign, print and media ads, the traveling exhibit and the cHronicile, developing the Facebook site, etc. That will presumably drop substantially now that the Media campaign has wound down. Then there's 200,000 for public policy and advocacy including the lobbying firm they use.
  15. Cort

    Cort Phoenix Rising Founder

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    I just want to point out that based on info in the 990 report this statement is not telling at all because it patches together two different periods in the CAA's history.

    The CAA raised the money in 2008 and began spending it in 2009 so there was never any way 2007 and 2008 were going to have high grant expenditures.

    Its obviously taking the CAA a couple of years to shift from a focus on education and policy to research but they appear to be doing that. Education, already down in 2009 will get a 50% cut in 2010 and research will make up the majority of their budget.

    Could they or should they have been devoting more to research earlier? That's a judgment call. Based on their research grants, the Biobank and the Research initiative my answer would be an emphatic Yes!
  16. mojoey

    mojoey Senior Member

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    Yes the amount earmarked for research can only go to research and it won't necessarily get paid the year it's earmarked. However, rule of thumb: to get a picture of how an organization is performing, you always look at long-term.

    Cort: the CAA received $3.8 million between 2007 and 2009 in non-government, completely private contributions. The $1 million from 2008 was not the only amount they could've chosen to earmark for research. Even if that entire $1 million was from private contribution, that still leaves almost $3 million in cash.

    Instead of asking what happened to the other $300k, I think we should be asking why they didn't spend the other $3 million mainly on research? And I think you already answered that question

  17. Cort

    Cort Phoenix Rising Founder

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    I think its legitimate to ask why they weren't spending more on research. In 2008 they spent $350,000 on research but no grants and they didn't spell out what that was for -which is problematic. They spent 265,000 on research the year before including 177,000 on grants.

    Look more closely at 2008; they brought in about 1.5 million. They spent $650,000 on salaries. They spent 265,000 on research, 220,000 on public policy/and 5-600,000 on education.

    (They also spent 2,500,000 on education, 1.9 million of which came from the CDC contract which means they must have thrown in on their own from 5-600,000 if I have my figures right. )

    So if you cut out salaries - if you look at their disposable income they spent about a 1/4 of it on research in 2008, if I got my numbers right.

    I would have liked it to be higher but they were focusing on education then; should they have focused more on research? - you can certainly make that argument. :)
  18. mojoey

    mojoey Senior Member

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    I think what you're saying here is essentially the same thing as what you quoted. The 3-year analysis shows that the CAA has not been focused on research for most of that time and uses the salary expense to grant ratio to indicate just how little was spent.

    I hope the CAA continues in the direction of more research. In 2009, research expense exceeded total salary expense for the first time. I think this should be the trend from now on, and by a fair margin based on their lack of research investment in the past. I'm completely open to the CAA's change of direction, but one or two years does not make a track record nor does it erase the past.

    I'll be watching with interest.
  19. mojoey

    mojoey Senior Member

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    I'm not sure where you're getting the 265k on research. Can you point that out?

    EDIT: Nevermind, I see you meant 2007 not 2008! And salary expense was $924,226, not $650,000.

    Salary expense is an expense just like any other. In for-profit companies, they're part of the income statement under SG&A. You can't just remove them when considering proper budget allocation to research. I don't begrudge management taking high salaries, but there has to be a measure of performance that their salaries are based on. What standard are those who donate to CAA going to hold them accountable to minimize the risk of management's complacency with donations? I think grant money distributed is a good measure, with total research expense being in second place.
  20. jspotila

    jspotila Senior Member

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    The position of Scientific Director was created in 2007, and Dr. Vernon joined the Association on November 1, 2007 after enough funds had been raised to support her salary and expansion of the research program. In November 2007, the Board of Directors made two key decisions: 1) Research should be elevated to the top programmatic priority; and 2) Approved the Campaign to Accelerate CFS Research with a goal of $1 million. During 2008, the Board engaged in two strategic planning processes: 1) examination of the research program, including the Request for Grant applications and review of proposals; and 2) long range strategic planning looking ahead 5 years. These processes resulted in 1) funding 6 grants announced in November 2008; 2) new statements of mission and strategy approved by the Board in November 2008 (among other things).

    No organization, even one the size of the Association, can turn on a dime. Old commitments must still be fulfilled, money must be raised for new projects, and changes in strategy play out over several years (absent a huge influx of cash that changes everything). The research program in October 2010 is completely different and operating on a totally different level from the research program in 2007. I think this adds context to the numbers in the 990s and annual reports.

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