Should I raise funds for Edinburgh/AfME or Daratumumab Phase 2?

Should I raise funds for Edinburgh/AfME or Daratumumab Phase 2?

  • Edinburgh/AfME

    Votes: 17 44.7%

  • Daratumumab Phase 2

    Votes: 21 55.3%
  • Total voters
    38
As a slight sidenote (too ill to find the exact right thread) I currently have the whole select a fundraiser thing popping up on facebook at the moment. I'm guessing these are things where for example if someone does do it once a year then it might be small bits that do add up.

It would be nice to have some of these that we can select that also put things in layman's terms that are attractive to the layperson who doesn't really care about ME and is just ticking a box because they have a friend/someone they know and is clear enough in what it is that they will get it and won't decide to 'disapprove' and assume it is something that is too hard for them to work out what they are sponsoring - which is where the terms like DecodeME are really good to have on those kinds of things.

It is also a great 30sec chance to get across a project that is happenning, and just from a point of view of showing that ME/CFS can be looked at scientifically and isn't all those whatever ideas people might have in their heads about us.

It would also be nice to have things I could select as a fundraiser that don't necessarily 'out' me to all contacts as a pwme. I certainly won't be putting my own blurb next to things.

Given MEA has got itself sorted on there (and are also good in things like the Amazon one etc, I don't know which ones bring in cash or how it adds up) along with some others like Solve it would be good to see ones that I'd really like to be able to just click search on to sponsor popping up easily under terms like SequenceME, DecodeME, Fluge and MElla - in terms that will mean something for others who these days might know little about me and certainly won't spend much time at all bothering to find out more than something saying 'ME' in it and then potentially that meaning a donation goes to somewhere that currently is doign things I think are not really in the interests of pwme

If it is there I could perhaps know which of the more technical titles to tick, but I'm not sure that people who don't have ME as I've learned from observing them for too many years, won't think better of that in their aim to pick something (and big brands work for a reason) that is 'well that is ME too, so I've done my bit' if they don't immediately get what something is.
 
I'm going to revive this thread to ask the same question but a year later.

My birthday is coming up in two months, and I want to encourage the people in my life to donate either to research instead of buying me a gift. I probably will also donate some of my birthday money that I receive from my grandparents. Should I encourage people to donate to ResetME or SequenceME? It seems like Fluge and Mella still need a little bit of money, whereas Ponting needs a lot more money. However, as this thread predicted, they have received governmental money and are likely to get some more from other organizations in the future. With the current state of things, what would people recommend? (Please don't vote in the poll as that is @V.R.T. 's previous poll and already has votes from the past.)
 
My view has shifted a bit a year on. Both seem valuable albeit at different timescales and with one now likely funded and one hopefully/likely to be funded in the future. So go for whichever you feel he most affinity with? Or just give people the option so they can choose which they prefer?
 
Update on my end: trying to get my parents to help with selling stuff last year was like herding cats so I didn't end up raising anything yet. However that situation may have changed and plan to list one or two things on Reverb and Ebay when capacity permits. If that goes okay I'll do some more.
 
Made my first sale - sold a synth to my dad! Kind of cheating I guess but the result's the same. And if it's cluttering up his house that's on him not me now :rofl:

Now to make some Reverb listings live and finally get the ball rolling on the rest...

Still undecided what to do with the money. Maybe the dara trial is best to finally get it over the line? Or Edinburgh as they don't have personnel funding for SequenceME and are struggling with the biobank lock out? How are people leaning/donating themselves right now?
 
Congrats with your first sale!
V.R.T. said:
Still undecided what to do with the money. Maybe the dara trial is best to finally get it over the line? Or Edinburgh as they don't have personnel funding for SequenceME and are struggling with the biobank lock out? How are people leaning/donating themselves right now?
Click to expand...
My birthday is still in a month and a half, but I’m thinking I want to email the daratumumab people or the organization that is doing the fundraising for it to ask if they need any more money. It’s been a bit since we’ve had an update, and it’s possible they have completed fundraising. If they haven’t, hopefully they’d be able to tell us how much they need. If you send that email, let us know what they respond. If you want me to send that email, I can. I think that’s the only way I can resolve this question for myself.
 
SugarSquared said:
Congrats with your first sale!

My birthday is still in a month and a half, but I’m thinking I want to email the daratumumab people or the organization that is doing the fundraising for it to ask if they need any more money. It’s been a bit since we’ve had an update, and it’s possible they have completed fundraising. If they haven’t, hopefully they’d be able to tell us how much they need. If you send that email, let us know what they respond. If you want me to send that email, I can. I think that’s the only way I can resolve this question for myself.
Click to expand...
Hey, that's a good idea. I'm a bit low on capacity for emails and things atm so I'd really appreciate it if you could send it!
 
V.R.T. said:
Hey, did you ever get in touch with the dara fundraising people?
Click to expand...
Wold, the leader of the ME Fund, recently posted on fb that ResetME needs another 750k NOK to be fully funded. £60k / €72k. The Fund has raised 2.5M NOK for ResetME so far this year.

There’s an ongoing fundraiser here where the first 150k NOK will be matched by one of the local divisions of the ME Association in Norway. It’s at 50k excluding matching after a week or so.
 
Utsikt said:
Wold, the leader of the ME Fund, recently posted on fb that ResetME needs another 750k NOK to be fully funded. £60k / €72k. The Fund has raised 2.5M NOK for ResetME so far this year.

There’s an ongoing fundraiser here where the first 150k NOK will be matched by one of the local divisions of the ME Association in Norway. It’s at 50k excluding matching after a week or so.
Click to expand...
Thank you! I hadn’t emailed, so I’m happy to have you answer for me.
 
bobbler said:
As a slight sidenote (too ill to find the exact right thread) I currently have the whole select a fundraiser thing popping up on facebook at the moment. I'm guessing these are things where for example if someone does do it once a year then it might be small bits that do add up.

It would be nice to have some of these that we can select that also put things in layman's terms that are attractive to the layperson who doesn't really care about ME and is just ticking a box because they have a friend/someone they know and is clear enough in what it is that they will get it and won't decide to 'disapprove' and assume it is something that is too hard for them to work out what they are sponsoring - which is where the terms like DecodeME are really good to have on those kinds of things.

It is also a great 30sec chance to get across a project that is happenning, and just from a point of view of showing that ME/CFS can be looked at scientifically and isn't all those whatever ideas people might have in their heads about us.

It would also be nice to have things I could select as a fundraiser that don't necessarily 'out' me to all contacts as a pwme. I certainly won't be putting my own blurb next to things.

Given MEA has got itself sorted on there (and are also good in things like the Amazon one etc, I don't know which ones bring in cash or how it adds up) along with some others like Solve it would be good to see ones that I'd really like to be able to just click search on to sponsor popping up easily under terms like SequenceME, DecodeME, Fluge and MElla - in terms that will mean something for others who these days might know little about me and certainly won't spend much time at all bothering to find out more than something saying 'ME' in it and then potentially that meaning a donation goes to somewhere that currently is doign things I think are not really in the interests of pwme

If it is there I could perhaps know which of the more technical titles to tick, but I'm not sure that people who don't have ME as I've learned from observing them for too many years, won't think better of that in their aim to pick something (and big brands work for a reason) that is 'well that is ME too, so I've done my bit' if they don't immediately get what something is.
Click to expand...
JUst to follow up on this

Facebook birthday fundraisers - they list charities on a dropdown

I have had a look and neither SequenceME or DecodeME are listed (worth checking - I know they aren't charities in themselves)

1. What is currently on this list that is the closes to one of these?

I think that there is something unique about these because some people want to be anon to their status and supporting these studies feels even more anonymous than eg an ME charity sometimes, along with knowing what it is going on

2. Could something be added that is along these lines - so that anyone searching could eg at least find the option where even if it is 'hosted' by a charity it is ringfenced for and says eg SequenceME on it?
 
bobbler said:
2. Could something be added that is along these lines - so that anyone searching could eg at least find the option where even if it is 'hosted' by a charity it is ringfenced for and says eg SequenceME on it?
Click to expand...
If anybody donates to a charity with a stated restriction attached (i.e. this is to be used for SequenceME&LC) then the charity is legally bound by that restriction - the only way they wouldn't be is if they refused the donation, which they have a right to do.

I don't know the exact situation in regard to Facebook fundraisers but I would guess that if you contacted the Action for ME fundraising team and explained what you were planning then this is something they are used to dealing with.

The important thing is to let them know in advance of any donations being sent to them.
 
Andy said:
If anybody donates to a charity with a stated restriction attached (i.e. this is to be used for SequenceME&LC) then the charity is legally bound by that restriction - the only way they wouldn't be is if they refused the donation, which they have a right to do.

I don't know the exact situation in regard to Facebook fundraisers but I would guess that if you contacted the Action for ME fundraising team and explained what you were planning then this is something they are used to dealing with.

The important thing is to let them know in advance of any donations being sent to them.
Click to expand...
I don't know as I've never really done one myself but they do come up a lot from others etc.

I remember those who used to work in fundraising etc that they always used to underline the importance of small donations adding up and to me this, along with perhaps the one the MEA used to plug a lot that relates to when you use Amazon to buy things are good ones because/if they seem simple to do - by taking it out of that person's hands and just advertising it on fb for them and then the money pledged going direct (with an amount raised but on that person whose birthday it is's timeline). ie it is no work and it can be ignored by people's friends, but you never know.

After we get to a certain age then buying presents for each other for small amounts particularly when you live further away tends to tail off but maybe a few people might donate - I don't know.

The added benefit of the facebook type ones (vs eg the when you buy with Amazon) is that it generates awareness - and for something like a research project having it actually named and popping up could make those who see it look into it. it also shows that it is supported etc. I wouldn't be surprised if there are even patients who are not aware of SequenceME yet. Then there are allies and people's friends family etc.

plus of course everyone has birthdays but not everyone has a charity yet that they are wedded to, so if those people ar elooking for inspiration either for that, or doing something else in future then you never know.
 
Andy said:
If anybody donates to a charity with a stated restriction attached (i.e. this is to be used for SequenceME&LC) then the charity is legally bound by that restriction - the only way they wouldn't be is if they refused the donation, which they have a right to do.

I don't know the exact situation in regard to Facebook fundraisers but I would guess that if you contacted the Action for ME fundraising team and explained what you were planning then this is something they are used to dealing with.

The important thing is to let them know in advance of any donations being sent to them.
Click to expand...
Thanks for confirming, that is interesting to know.
 
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