Pooling our resources

[brd888]

Out of curiousity, say there is an Ocular Surface Disease Association or whatever, would there be patients actually interested in joining and participating in signing petitions/letters to the medical field that we need help or fundraising to give money to research etc?

Sandy,
Yes this is more of what I am thinking. Petitions/letters/funding.
For example If I or we contacted The Department of Vision Sciences at Glasgow Caledonian University (for example) maybe we could find out they have ideas and areas which need funding for research. Thus we could petition charities or government departments to attempt to divert funding. It might never work of course but I think it is at least being positive.

Also we have to consider groups such as The Dry Eye WorkShop (DEWS) who may already be doing this sort of thing anyway.

Cheers,
Bruce.

[Rebecca Petris]

I think that organized efforts can be effective, with or without actually incorporating. Organized is the main thing. I'd love to work in that direction except that unfortunately I'm already overextended so I've had to content myself with doing what I'm doing.

As regards 501c3, odydnas, the incorporation part is not that big of a deal. We did it for LaserMyEye back in 2004. Basically you need some names to form a board of directors, $500 for the IRS, a coupla hundred for expenses associated with local incorporation (depending how you do it) and either someone smart to deal with all the initial paperwork or some money to throw at a lawyer to do it for you. What's much more involved is what comes after. To really wield some influence you need a medical advisory board and some serious fundraising (ala Sjogrens Syndrome Foundation). Or going the grassroots low-budget direction, you just need to be really organized and get some good ideas going. - Which then goes back to Bruce's point (I think) which is that given the people, ideas and organized-ness, it might be effective with or without a 501c3.

[odydnas]

I think what lboogie and I meant to say is that when individuals try to push the medical field to take us seriously and actually put some money into research for dry eyes, it's futile. I mean....especially if its a disease that health professionals and our friends/family roll their eyes at.

But when an association or group of people (with a name) try to put pressure on the medical into doing this, only then will our voices be heard and we'll be taken more seriously.

I mean not just medical help but social help too. Wouldn't it be great if severe dry eye can be considered a disability so it would be easy for us to get accomadations that we need, health issurance to cover eye drops, goggles, etc, and disability coverage if we need to stop work for a while?

Being on the computer is tough, but when I can, I will try to read up on what it takes to start an organization and this 501 c3 status...which I know absolutely nothing about.

Out of curiousity, say there is an Ocular Surface Disease Association or whatever, would there be patients actually interested in joining and participating in signing petitions/letters to the medical field that we need help or fundraising to give money to research etc?

[brd888]

Ok but

Yes but I am not talking about forming a group or association. I mean we have lots of people on here looking for answers but not really doing anything to progress or push the medical field...

I attach an email I received after donating a small amount to a charity:

> Dear Mr Dunn
>
> Further to your emails about your 'dry eye' problem. You will be glad to
> know our research group here includes a leader in the field who has an
> expert knowledge of mucines and collaborates with others all over the
> world, seeking improved treatments for this condition.
>
> It is very helpful to have the advice of a dry eye sufferer and emphasise
> the need for more work to be done.
>
> All best wishes,
> Sam Gaussen
> Director
> National Eye Research Centre

Now, thats lovely, isnt it? But with a little pressure maybe we could find out more about their "leader" and his latest efforts.
Meanwhile we have experts like Alan Tomlinson in Glasgow who has written a book an inch thick about the tear film and meibomian glands - he knows it like I know beers. Yet what treatments have we? A hot bag and a cotton bud? 101 eye drops with the same 2 or 3 active ingredients?

Regards,
Bruce.
PS despite what I say the hot bag really does provide relief...

[lboogie]

Seriously -- that is a great idea. NOT that Rebecca needs more to do. But I don't see why there couldn't be a Dry Eye Disease Association, or an Ocular Surface Disease Association -- with 501 c3 status. Not sure what results it would have -- it seems though, that at a minumn it would allow the organization to fundraise, pay a staff membmer or 2 (like Rebecca), and potentially have a bigger voice where we need to have it.

[odydnas]

I think that's a good idea, Brd888. Instead of sending in individual letters/complaints, I think we should lobby as a group, with a name too, like the Dry Eye Association...or something like that..haha, just like other diseases. It would just be easier to make our voices heard.

[brd888]

I noticed with the recent FDA article how difficult it is for Rebecca et al to try and publicise dangers of laser surgery when faced by corporations and scores of surgeons who rely on it for a salary.
Of course I agree that something should be done about that despite the adversity.

However what about trying to lobby something more positive?
Three areas needed in medical science are I think:
1. A field of medicine between Ophthalmology and Dermatology.
2. Research into improving prognosis of lasek dry eye patients.
3. Better treatments for Blepharitis / MGD.

Even if we could get papers or updates from "experts" who are working in these areas would be nice...

Any thoughts?

Thx
Bruce.