Now that December 31st has passed and our team’s work on the crowdfund has finished, it’s time for us to thank you!
And there are so many thanks to give…
Our project began, of course, when Vanessa Li, a Phoenix Rising forum-member, decided to start a crowdfund for Drs Lipkin and Hornig’s ME/CFS gut microbiome study, and asked on the forums for help.
And there’s our first and biggest debt of thanks: to Phoenix Rising, the patient-run nonprofit that hosts the biggest and most popular ME/CFS forum on the internet.
The forum allowed us to get going, and to recruit a wide collaboration of forum members who brainstormed with us in the early days and helped us to think through many of the practical issues.http://www.cortjohnson.org/blog/2014/12/22/christmas-time-microbe-discovery-mecfs/
Then, when our core team set to work, Phoenix Rising gave us a place online to do that work, without which our project wouldn’t have been possible. We owe Phoenix Rising, especially Mark and Kina, our deepest gratitude.
As we scrambled to get our website ready to launch the project, others heard the call and came forward, from our web designer, who set up our site and and gave it and the rest of our social media pages their striking visual identity (who would have thought that microbes could look so beautiful?), to translators who put our text into Chinese, Japanese, Italian, Spanish, German, Dutch, Czech and Norwegian.
And when we launched the campaign, we put out a wave of requests to every ME/CFS organisation and support group that our volunteers had told us about, and to every high-profile blogger, asking for their help to spread the word.
And help they did. The blogosphere lit up. Simon McGrath and Sasha wrote articles for Phoenix Rising, Cort Johnson for Health Rising, Mindy Kitei for CFS Central, Jorgen Jelstad for De Bortgjemte. The news went out on Jennie Spotila’s Occupy CFS, on Prohealth, on Co-Cure, and on the popular Facebook pages of Jen Brea’s Canary in a Coalmine and Ryan Prior’s Forgotten Plague documentaries. Columbia University’s Mailman School of Public Health put out a piece on their website. ME bloggers including Maxine Smith, Johan Mares and Paul Tomkins took up the cause. As the news spread, we got fresh articles and mentions by writers on much-visited platforms outside the ME/CFS community, including David Tuller on BuzzFeed, Julie Rehmeyer on science blog The Last Word on Nothing, and Richard Nikoley on Free the Animal.
Simon McGrath in particular wrote and wrote and wrote in support of the campaign, with news pieces for our website, articles for ME Global Chronicle (who published regular campaign updates), and even a series of campaign newsletters.
The ME/CFS social media were on fire, and your donations started to roll in. With all your help, we had built it and you came! Patients and supporters started to contact us about their fundraising efforts: a bookstall (Australians Brooke and Belinda Nickeas), a concert (Rachel Donahue, Matt Beauchamp, Christine Jarrett and other Zionsville Fellowship Church members in Indiana), sales of a patient’s own art (Sarah Allegra) and of an author’s books (Anna Cayder’s 150 Tips for Everyday Living with ME/CFS).
There was a duathlon (Harpreet Kalsi), a vertical run up a skyscraper (James Ockenden), a garden fete (Hazel) and an ice-bucket challenge (Nathan). Elisabeth Tova Bailey, hosted by James Ockenden, did live internet readings from her book, The Sound of a Wild Snail Eating.
And at the very end of the year, eight-year-old Andrew and his brother generously gave us some of their Christmas money.
There was so much more. Phoenix Rising ran a forum banner throughout our campaign, to promote it. Action for ME and the ME Association handed out flyers for our project at Dr. Lipkin’s talk in London, as did James Ockenden and his friends on the streets of Hong Kong. Russell Fleming supported the project with huge and timely amounts of information. Sarah Allegra and Nicolette each made videos calling for donations.
Patients sent us their stories and posted messages about why they were giving their money to the project. You shared and liked, tweeted and retweeted, discussed, and donated. And then you donated some more.
And as the year ended and our team’s work came to a close, with donations still pouring in, we’d received over $188,000 from over 1,100 individual donations from 25 countries, and had built a storming social media presence of over 6,000 Facebook ‘likes’ and nearly 700 followers on Twitter.
We’ve mentioned just some of the people we’d like to thank, and just some of the things you did for the campaign. In fact, there were far too many contributions to thank each person individually and some prefer to be anonymous. But we’d like to thank you all, for the tremendous support you gave us over the past year and for your great generosity in making hundreds and hundreds and hundreds of donations.
And finally, we’d like to thank Drs Lipkin and Hornig and their fantastic administrative and fundraising team at Columbia who have supported us throughout this crowdfund.
Our team began this fundraising project because we could see what an amazing opportunity it was for all us ME/CFS patients to get world-class research on our neglected disease done by these absolutely stellar researchers. There are none better. We are lucky — so very lucky — that they care about us and are determined to solve the puzzle of this devastating disease.
We thank them, and we thank you all.
The Microbe Discovery Project team