Crowdfunded awareness campaigns including billboards

[rvallee]

I wasn't sure where to post what will be the 2nd message in this thread, but it made sense to create a thread for it. There have been several substantial efforts so far in Germany, I've seen some in the US, on mass transit and highways, and it would probably be helpful to have a resource for anyone interested in pitching in for crowdfunded awareness campaigns.

We can't wait for organizations and other groups to organize, grassroots efforts are always a cornerstone of any movement and in some places they can be surprisingly cheap. Some billboard placements seen on the roadside or in mass transit can be mere dozens of dollars per day.

There is clearly interest for this, and if you see any out there in the wild, do post them here.

Of course with crowdfunding comes some risk, so be mindful that the sources are credible and providing receipts.

 

[rvallee]

United Kingdom

https://www.gofundme.com/f/billboards-for-long-covid-and-mecfs

Hey guys, I've created a GoFundMe for UK billboards. I've just chosen an arbitary target of £5,000 but as stated on the GFM, ALL decisions will be made with Twitter polls and the target can be amended at any time and I won't make any profits from this.

 

[Trish]

I guess it might work in some countries. I hate billboards, as in cities they distract drivers and add the visual clutter, and in the countryside they distract drivers and spoil the view. I wouldn't recommend such campaigns in the UK, but that's just my personal view. I'm all for temporary banners in street demonstrations.

 

[rvallee]

I bought a billboard for @BerlinBuyers in NYC, on the Hudson River Greenway, for Southbound traffic (e.g. traffic coming down into NYC) around W 155th st.
If anyone is driving in this area between now and Oct 27 can you pls take a picture I had to PS it in for the tweet LOL

 

[rvallee]

Advocacy in Action
Kyle, Texas Wichita, Kansas Georgia Denver Las Vegas New York City All areas that patients are taking matters into their own hands to create & amplify LC awareness.

 

[ahimsa]

I remember that I posted some links to resources about renting billboards in another thread.

https://www.s4me.info/threads/long-...d-social-media-2023.31490/page-52#post-497730

I thought it might save some folks some searching/clicking on twitter/X.

 

[Jaybee00]

But what policy outcome are they hoping for with these billboards?

Would be better if there was a phone/web address address to call lawmakers or to donate money.

 

[rvallee]

Most people don't know about LC. That probably applies to most people with LC. With medicine being completely derelict, awareness is the first step, but even respected diseases with funding and research networks do plenty of basic awareness. There is simply no system set up for this.

 

[Ash]

I think it’s dangerous to raise awareness if you’re not going to direct that awareness in a constructive direction.

 

[NelliePledge]

I wonder why they chose this medium rather than others

 

[Dakota15]

I've been thinking about this too, just overall...where would you advise any awareness points to, @Ash? Not trying to be devil's advocate, just wondering. For instance, if I'm a ME or LC patient, I and want to do something like this for awareness, is my only choice to partner with #MEAction (I'm trying to think of others)? And what happens then if that advocacy org. doesn't want to invest dollars in that?

 

[rvallee]

I wonder why they chose this medium rather than others

Organic/grassroots is whatever people choose to fund. It may not change much, or it may, but the sum of all efforts is what makes a difference in the end.

Then again I saw a reddit thread today on our provincial subreddit asking if anyone else had gotten serious health problems since they got COVID and almost all answers are about depression and burnout, so awareness is definitely lacking since medicine is covering it up very effectively.

Which makes the op-ed from Vogt and Garner all that more ridiculous, but ideologues gonna do what ideologues do.

 

[Dakota15]

I get the goal of “give them a toolkit or place to go for constructive direction” but I’m wondering if it’s also not a net zero for even just awareness raising.

When I got sick in 2017 in my home state of Minnesota, I felt there was next to zero awareness of ME where I lived. Even something as minimal as a public display, as trivial as that sounds, would have made me feel somewhat validated and possibly inspired me to get involved in advocacy. I can say that more visibility has made me become more involved the last few years.

I think sometimes we place a perfect standard on what messaging needs to be, and perfect can be an enemy of the good. If LC or ME advocates want to put these up around the USA (or elsewhere), I’m all for it. There can be different campaigns with different asks that still share common goals in the end.

 

[Ash]

I've been thinking about this too, just overall...where would you advise any awareness points to, @Ash? Not trying to be devil's advocate, just wondering. For instance, if I'm a ME or LC patient, I and want to do something like this for awareness, is my only choice to partner with #MEAction (I'm trying to think of others)? And what happens then if that advocacy org. doesn't want to invest dollars in that?

I think patients are more than welcome to do whatever advocacy they want and how they want. But the bigger the group and the more people/money is involved the more responsibility to make sure that they are being properly strategic. Also not having negative effects on other communities or patient groups. All this applies to any progressive movement not just those health or ME/LC related.

I would rather a diversity of groups working for change than coalescing around ME Action. I have problems with some of their tactics. Also I think a diversity of approaches is beneficial.

Back to the bill boards they might work well as a primer for people who haven’t thought about LC one way or another, but they don’t point people in a direction as to how to address the issue productively. Going by more general political campaigns and the disappointments in ME advocacy I’d be concerned that this is leaving the door open for people who don’t have pwLCs best interests at heart to squeeze into the narrative.

I think best to raise awareness and make your demands at the same time.

An obvious one would be research funding now. Whatever else they think should be done. Work place safety etc.

 

[Dakota15]

I appreciate your input, @Ash.

Where would you point to address this issue productively in this instance, if it was centered on “research funding now.” Just curious (if anyone else has thoughts or ideas please feel free to share too)

 

[Ash]

I appreciate your input, @Ash.

Where would you point to address this issue productively in this instance, if it was centered on “research funding now.” Just curious.

If I understood your question correctly, and this is about the bill boards still, I don’t know what the groups funding these specifically want to achieve with this advertising campaign. So I can’t give a specific answer as they might want something I don’t know about.

I assume that they want to make people aware that they are suffering, which I think the billboards are likely to do just fine. But also for people to be moved to want to help them and improve the situation for all people with Long Covid, or to protect people from getting Long Covid.

People with LC need many resources as do all sick and disabled people. What I’ve heard most often as the priority is infection control to save people not yet affected. That’s a more difficult sell given the scale of the situation.

The next priority by a long way is government funding for accelerated research. This is actually very easily asked for. Very easily ignored, but still easy to request.

So using that as an example of something to ask for, they could put an instruction on the board, something similar to call your representative, request (?)% increase in funding.

I don’t know if it matters so much what people ask for, but I want people to actually ask for something. Something specific.

So on the billboard it could be a certain % of increased government spending on biomedical research a concrete demand.

Or it could a demand to supply biomedical healthcare provision and or social care funding to support individual LC sufferers to survive.


Edit: see below.

Otherwise…. Imagine someone sees the billboard thinks whats that about goes away looks it up sees article after article about mental health and functional disorders and leaves it there.

That’s an opportunity wasted and a worse option than doing nothing, a waste of money resources etc by the advocate

 

[Wonko]

Are billboards even a thing any more?

I haven't seen one in use in years, and I used to live across the road from 2 of them.

All they said for years was 'to advertise here call.....'

 

[Ash]

Are billboards even a thing any more?

I haven't seen one in use in years, and I used to live across the road from 2 of them.

All they said for years was 'to advertise here call.....'

They are but mostly just for perfume advertising at Christmas.

 

[NelliePledge]

I have no idea of how cost effective a billboard is compared to a Facebook ad or a local newspaper or TV ad.

 

[Amw66]

I think billboards are probably effective in USA as largev road network and public transport out with metropolitan areas is poor. So large roadside messaging may be effective.

Billboard type signage can also be memorable on long monotonous stretches of road , but it's not common here .(UK) If it's termed a distraction it s a no go on road safety grounds .

UK I think adverts at bus stops / on buses may be effective as they cover vehicular and pedestrian modes of transport .

ETA edited to make more sense