Fundraising

[dominorose]

I just discovered the ice bucket challenge for ALS, and I really think we should do something for DES. I can't stay here arms crossed waiting for the storm to pass, hoping for a possible recovery but struggling, suffering and depressing because of this horrible condition.

I discovered the website : www.youcaring.com

I do not live in the US, but am ready to start a fundraising on this platform (if anyone here is ready to help and support me it would be great).

I don't have the same pretention as ALS because their disease is far severe than ours, but I really want to DO something to make people understand it IS an invisible disease, but it is REAL. I just need tips on how to explain it because I plan to make a video and put it on Youtube. If you guys have any ideas on how I could make it obvious in a video I'm interested.

[cathy8889]

It's a brill and kind idea domino rose. I was thinking the other day that id love to start up charity, just to raise awareness. I will have a think, it might be good to include testimonials so people can see that it effects young and old, male and female and it's severity varies greatly. I think a good overview of ilike the physical impact and then move on to the mental impact, the not knowing what's causing all this, the anxiety, depression, frustration and loneliness it causes, the lack of support and care from some doctors and specialists, the way you have to educate yourself, how amazing the dry eye zone is. The impact that dry eye has is downplayed so much and that's the thing that needs to be highlighted, the effect it has on quality of life is unbelievable, the number of things it stops you doing and enjoying. I was so scared earlier this year and had it not been for this forum I don't know where I'd be, I'm so grateful to Rebecca for starting this site. It would be amazing if we could raise awareness of the dry eye zone and of the disease.

Cath x

[André Pereira]

dominorose

Great idea.
The first thing I thought here is that I will definitely make subtitles in Portuguese for this video. (For a version of it)

You think of raising funds for what purpose?

I can help you if necessary. Now I'm kinda out of ideas why I'm going to sleep. Tomorrow I'll wake up with some ideas and sure I post here again.

Girl, you really got attitude towards our problem.

[dominorose]

I want to raise funds for medecine research. I am sure we do not have a cure because there is not enough people with severe DES, and so we're not "worth the cost" if you know what I mean?

I want to make this video but not sure I can because I write better than I speak english, and once again, HOW can I show my life is a nightmare because of this in a video? How can I make it obvious? Filming my eyes won't make people understand, because it is not visible for people who are not specialised if you know what I mean. It's really complicated.

[littlemermaid]

Just for info in case it helps, in UK we have a good and accessible umbrella charity http://fightforsight.org.uk/ which sets an agenda for funding eye research. All eye charity and academic consortia belong to it and consult, also advocacy groups for disorders which cause eye problems. Some Members here are fundraisers for this http://fightforsight.org.uk/fundraising - they are accessible, consult very well, are run 'on a shoestring', and allocate the money in grants direct to public research start-ups. We were ranked top priorities in the 2013 multi-agency report 'Sight Loss and Vision Priority Setting Partnership' p24 and p25 'Corneal and external eye diseases' http://fightforsight.org.uk/tl_files...Report_WEB.pdf

Hankm9 here was into crowd-funding for start-ups but only for eyedrops but I don't know where we are on that.

(In UK we also have http://www.vision2020uk.org.uk/ for people 'in the business' but that's not accessible for patients and volunteer advocates (astronomical conference costs, no access webcasts or consultation).)

Some dry eye patients here have been turned away here by eye charities. When I speak to them, they fall over themselves to apologise but too late, these poor people are in despair. I've found we have to stress the pain and debilitating effects on quality of life, maybe call it 'chronic eye inflammation'.

Worldwide, medics and optometrists don't believe young people get these problems or know anything about them, and then everyone assumes they are well looked after. (The opposite is true for a child's chronic painful 'red eye' unless we find paediatric ophthalmologist cornea specialists - there's not many of them. Children's and young people's eye problems are often undetected and neglected rather than rare and there is a terrible 'postcode lottery' on access to help.)

Dominorose, maybe there is something like this in France which would do the admin so you could concentrate on your message? Would it be good to have a chat with your docs if they are well-known (SD maybe CB, who is currently president of SFO supposed to be working on http://www.sfo.asso.fr/grand-public) for ideas that support you both professionally?

I think Blogs have been the most useful for me. Especially patient advocate blogs from the USA, which can include video.

Everyone has the same coordinated medical care problems worldwide, and some organisations are trying to provide Coordination advocates with medical training - OMG do we need this help.

You might also be interested in http://medicinex.stanford.edu/, which looks like the doc/patient future, and there's a meet coming up in September which will be online.

[André Pereira]

I think an explanatory video is very interesting. Serves to put on the internet as to show to a friend or someone you want to understand the disease.

I spent all day thinking about it and I did not have many creative ideas. So here's what I got:

1-The video starts with the question: Have you ever heard of dry eye syndrome? Then comes a brief explanation about the disease. Here we say that it is very debilitating, incurable in some cases (only gives to soften) and other things.

2-In this second part we try to put the viewer in our place.
For example. Did you know that anyone who has dry eye may not (several things fit here). Imagine you will give a simple bike ride and can not (or any other example). Here we try to show that simple daily tasks can become epic battles for us. We can show the complications that we have at work too.

Some examples of jokes that we suffer too.

That part would to make some kind of visual example while someone narrates the situation. I know anything about video editing, the problem is the time to do it now. To begin narrating only is good. After giving to improve.

3 - It is explained what are the psychological effects and damage to quality of life.

4 Here we explain what are the causes of dry eye.

5-Some testimonials of how it affects our lives. (Somebody candidate?)

6 - Outcome. I do not know how to be the outcome. Ran out of ideas.

Nothing too extraordinary.

That's what my head produced today.

[André Pereira]

About fundraising.

As the causes of dry eye are numerous, and also treatments. I can not imagine how to allocate an amount of money for research. What kind of research. To which type of dry eye? Which approach? Drops? Studies of disease mechanisms? It is very broad.

The icebucket chalenge only worked because famous people began to participate in it.
I asked my colleague if he now knows what the purpose of the videos. He replied: It is something to lateral sclerosis. People watch because it's fun.

I think this video as a first step informative. Are great ideas you had and takes time to be able to develop something.

[dominorose]

I will try to make it tonight. Thanks André and LM, I'll keep you posted