I've tasted freedom with today's metabolomics revelations, and now I need more.
Microbe Discovery has recently written an article about fundraising. Beyond asking for small donations from patients and family - they really do count - they make a list of suggestions for fundraising:
http://microbediscovery.org/2016/08/29/mecfs-monster-study-needs-5-million-how-do-we-get-there/
So far the project has raised about $10,000. I do not know how long the fundraising has been going for - a few weeks at least. With a target of $5million, we seriously need to step up our game.
I feel dwarfed and almost apathetic by the enormity of $5mill, but I reckon if we can get part way there then larger donors - public and private - will step in. The thing is to create noise and get noticed.
So this is a call out to everyone to mobilise the troops. We need to hit well-known and widely-read CFS blogs. I am going to contact Cort and see what he thinks about finding a permanent and prominent place for it on the HealthRising homepage.
I will get onto Reddit and post it up on the CFS homepage and see if I can get someone to sticky it.
Does anyone know the feasibility of PR admins sending out a single mass fundraising email to everyone who has ever had an account here? There must be hundreds or maybe thousands of dormant accounts - is there anything in the privacy policy to stop us contacting them? @Sushi? @Kina? Who might be able to organise something like that?
Does anyone else have any suggestions for how to kick up a fuss about this?
Microbe Discovery has recently written an article about fundraising. Beyond asking for small donations from patients and family - they really do count - they make a list of suggestions for fundraising:
Talk and share
Help increase the amount of views we get on our website and of the information about the study. There are many places people can talk and share about the study and fundraising for it, even if you can’t donate. Share the project on internet forums, Facebook groups and Twitter, even in groups about SIBO or IBS or other groups that may have people with ME/CFS in them. Celebrate the milestones we reach too and share about those. Why not ask friends or family to donate, or donate for birthdays? Even Christmas isn’t that far away now.
If you notice information hasn’t been shared on a forum or in a group for a while consider making a post. If you were able to donate let people know you have donated and why. Share about the fundraising effort in comments sections of articles about ME/CFS and post links to the site and the study. Write awareness-raising posts or make a video showing your support.
This all encourages views and donations
Journalists, Bloggers, Philanthropic /Charitable Organisations and Advocacy
If you know of a Journalist that may write about the fundraising efforts please contact them and tell them about it. If you have a blog please write the project and your support. If you can contact your US congressional representative about funding being needed for this research, as well as other research – please do! If you want to contact a philanthropic or charitable organisation to see if they may support with some funds – please do! Feel free to use information from the MDP website to help you.
On the ground fundraising
Many diseases/illnesses have fundraising drives that bring in a huge amount of extra money for research this way. Draw in the community if you can. Some people may be able to run fundraising events, or know someone who can help with them. Some people may be keen to sell something they don’t want and donate the proceeds. Things like fun runs, triathlons, tea parties, bake sales, garage sales, you name it and it becomes an option! Send us more idea’s to add here, especially for patients.
http://microbediscovery.org/2016/08/29/mecfs-monster-study-needs-5-million-how-do-we-get-there/
So far the project has raised about $10,000. I do not know how long the fundraising has been going for - a few weeks at least. With a target of $5million, we seriously need to step up our game.
I feel dwarfed and almost apathetic by the enormity of $5mill, but I reckon if we can get part way there then larger donors - public and private - will step in. The thing is to create noise and get noticed.
So this is a call out to everyone to mobilise the troops. We need to hit well-known and widely-read CFS blogs. I am going to contact Cort and see what he thinks about finding a permanent and prominent place for it on the HealthRising homepage.
I will get onto Reddit and post it up on the CFS homepage and see if I can get someone to sticky it.
Does anyone know the feasibility of PR admins sending out a single mass fundraising email to everyone who has ever had an account here? There must be hundreds or maybe thousands of dormant accounts - is there anything in the privacy policy to stop us contacting them? @Sushi? @Kina? Who might be able to organise something like that?
Does anyone else have any suggestions for how to kick up a fuss about this?