I've been really disappointed with the progress thus far on the campaign. I feel like we are moving too slowly. I completely agree with Rosie26 about hiring a fundraising expert. I wonder how much that would run?
I've mentioned this before but I think it would be helpful if we had a compelling video similar to Ryan Prior and Jennifer Brea's Kickstarter videos. Maybe we could contact them about creating something? Or maybe there is someone reading this message right now that could help us with a video?
Maybe people aren't donating because they prefer avenues like Kickstarter for this sort of thing? Is there any aspect of this study that could be moved to Kickstarter? Maybe people don't feel like all the websites and redirects are user friendly and they change their minds or give up?
Morning
There is a video of course and we now how it with subtitles in several languages I believe or very soon will (visit our website for more:
http://www.microbediscovery.org/:
We decided against using Kickstarter or another similar platform early in the campaign for one simple reason: cost. Up to 10% of donations would be taken if we opted for this method - which with research we didn't feel was what people wanted to see and for a large campaign such as this - well you don't need me to do the math. We could have declared ourselves a non-profit and reduced this cost but we are a small team, all sick, and didn't want to take on that degree of responsibility, especially when Columbia are a non-profit themselves.
This way we are acting as promoters and by continuing to work closely with Columbia and the team of scientists who will be carrying out this project, we will be producing more promotional material and direct campaign efforts over coming months.
Our energies now are focused on reaching out internationally to the many ME organisations in each country, asking them to help us reach individual patients, their families and friends. We plan on contacting doctors as well as local support groups - where we have been able to discover names and contact information.
One of our team who has kindly taken on this role of organisation is currently in hospital - and we all wish him well - but we have recently been joined by two others, both from the USA, with strong knowledge of science and of the movement on the ground in the States.
But really we are now focused on networking - trying to reach all those many groups who work at ground zero and connecting with them to try and obtain small, affordable donations but from as wide a pool as possible.
And Columbia and Lipkin have also made it clear that they too will be working from their own positions of knowledge to seek sponsors. We work closely with those at Columbia who deal with large donations, and we hope to see in the near future better results from their own engagement efforts.
Much of this time has been necessarily spent trying to get to know one another and to form a coherent strategy, and plan for the remainder of the campaign period. As patients we have had to educate Columbia on what we think the community needs in terms of detail, knowledge and understanding; and Columbia have been listening.
But we also need to keep working with them in order that initial efforts, e.g. Lipkin's video appeal, David Tuller's Buzzfeed article, Lipkin at IACFS/ME etc. continue to be replicated and the campaign remains in the public eye.
I hope to see upcoming publications that might lend substance to the efforts thus far from Lipkin and from CFI. I think the CFI presentations at the IACFS/ME conference were not as prominent in the minds of our community, as they should have been, simply because there was so much coming from those conferences: but hopefully we will have an article shortly and possible an interview with Mady Hornig that will lend additional focus the efforts pertaining to a 'Pathogen Hunt' and also the the Microbiome.
But we are ever open to new ideas, we can't have thought of everything, and whilst I can't promise we'll follow through on all your ideas - simply because we can't do everything - I can promise we'll listen and do our best.
I think the very best thing that people can do for the campaing right now is to share the information that we have - visit our website and Facebook pages and try to keep the information and news we do post on your own home pages to share with your friends and family along with a short personal message asking them to donate whatever they can afford: and we will continue to do our best to keep this campaign effort visible.
Thanks.
