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Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates
- Thread starter Bob
- Start date
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
The Microbe Discovery Project said:Today's Crowdfunding Update
The latest crowdfunding total is:
$165,485 from 1,048 donations.
Thank you so much to everyone!
Me too!!!! Let's make one final push, then pat ourselves on the back for doing the best we could!!!
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
In a First, Test of DNA Finds Root of Illness
by Carl Zimmer
June 4, 2014
New York Times.
http://www.nytimes.com/2014/06/05/health/in-first-quick-dna-test-diagnoses-a-boys-illness.html?_r=1
I've just read this article from June 2014.
Dr Lipkin often talks about "personalised medicine" in relation to his ME/CFS research, and I think this article helpfully describes what it is. Or at least, the type of testing and treatment that it can involve.
It also describes the sort of cutting-edge (next generation) technology that Dr Lipkin's lab is famous for, that he'll be using to search for microbes in the gut-microbiome study, and some of his other ME/CFS research projects. (I can't remember if he's used the same technology on Dr Peterson's spinal fluid samples. I hope he has.)
The article is written in easy-to-understand terms.
by Carl Zimmer
June 4, 2014
New York Times.
http://www.nytimes.com/2014/06/05/health/in-first-quick-dna-test-diagnoses-a-boys-illness.html?_r=1
I've just read this article from June 2014.
Dr Lipkin often talks about "personalised medicine" in relation to his ME/CFS research, and I think this article helpfully describes what it is. Or at least, the type of testing and treatment that it can involve.
It also describes the sort of cutting-edge (next generation) technology that Dr Lipkin's lab is famous for, that he'll be using to search for microbes in the gut-microbiome study, and some of his other ME/CFS research projects. (I can't remember if he's used the same technology on Dr Peterson's spinal fluid samples. I hope he has.)
The article is written in easy-to-understand terms.
Last edited:
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
The Microbe Discovery Project said:Today's Crowdfunding Update
The latest crowdfunding total is:
$168,383 from 1,064 donations.
Thank you so much to everyone!
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
The Microbe Discovery Project said:
The Microbe Discovery Project said:Today's Crowdfunding Update
The latest crowdfunding total is:
$169,828 from 1,072 donations.
Thank you so much to everyone!
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
The Microbe Discovery Project said:
Andrew's family's Facebook post:
https://www.facebook.com/ckjarrett/posts/10204604725452631
Our Facebook post:
https://www.facebook.com/microbediscovery/posts/772086746193695
aimossy
Senior Member
- Messages
- 1,106
Greetings in this New Year everyone
THANK YOU! THANK YOU! THANK YOU! - for your fantastic support and for every single donation.
New total update: $174,008 from 1094 donations!
All the donations from the year end are still being processed through the banks - stay tuned folks!
You will be aware, that we are now at the end of our patient driven crowdfund with the end of 2014 and we are stepping down. Rest assured, we will be bringing you more information from Columbia about Dr Lipkin and Dr Hornig's plans with what needs to happen. As you can imagine we have a fair amount to work through, so please bear with us!
Our whole team sends everyone our very best wishes for 2015!
We hope for great research publications this year for ME/CFS. We are especially looking forward to Dr Lipkin and Dr Hornig's new findings being published and shared from the work they have been doing in 2014. As you know, these researchers have an impressive ongoing programme of biomedical research into ME/CFS. They are and have been doing the fundamental science to find out what is going wrong in our bodies. This could be a great year for ME/CFS!
- The Microbe Discovery Project Team.
THANK YOU! THANK YOU! THANK YOU! - for your fantastic support and for every single donation.
New total update: $174,008 from 1094 donations!
All the donations from the year end are still being processed through the banks - stay tuned folks!
You will be aware, that we are now at the end of our patient driven crowdfund with the end of 2014 and we are stepping down. Rest assured, we will be bringing you more information from Columbia about Dr Lipkin and Dr Hornig's plans with what needs to happen. As you can imagine we have a fair amount to work through, so please bear with us!
Our whole team sends everyone our very best wishes for 2015!
We hope for great research publications this year for ME/CFS. We are especially looking forward to Dr Lipkin and Dr Hornig's new findings being published and shared from the work they have been doing in 2014. As you know, these researchers have an impressive ongoing programme of biomedical research into ME/CFS. They are and have been doing the fundamental science to find out what is going wrong in our bodies. This could be a great year for ME/CFS!
- The Microbe Discovery Project Team.
Greetings in this New Year everyone
THANK YOU! THANK YOU! THANK YOU! - for your fantastic support and for every single donation.
New total update: $174,008 from 1094 donations!
All the donations from the year end are still being processed through the banks - stay tuned folks!
You will be aware, that we are now at the end of our patient driven crowdfund with the end of 2014 and we are stepping down. Rest assured, we will be bringing you more information from Columbia about Dr Lipkin and Dr Hornig's plans with what needs to happen. As you can imagine we have a fair amount to work through, so please bear with us!
Our whole team sends everyone our very best wishes for 2015!
We hope for great research publications this year for ME/CFS. We are especially looking forward to Dr Lipkin and Dr Hornig's new findings being published and shared from the work they have been doing in 2014. As you know, these researchers have an impressive ongoing programme of biomedical research into ME/CFS. They are and have been doing the fundamental science to find out what is going wrong in our bodies. This could be a great year for ME/CFS!
- The Microbe Discovery Project Team.
View attachment 9561
And thanks to the MDPT for their (your) hard work !
I am interested to see where it goes from here, and what Dr.s L and M have to say.
I am hoping they can pull a rabbit out of the hat and get the rest of the funding they need.
I will continue to send in when I can.
But I'm afraid I'm not going to do much to get them to the amount they need.
Thanks again to all who helped and who donated !!
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
The Microbe Discovery Project said:Today's Crowdfunding Update
Columbia has informed us that a whopping $10,000 donation cleared through the system over-night, along with a number of other very generous donations, taking the total number of donations above 1,100...
So the latest crowdfunding total is:
Thank you so much to everyone!
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
The Microbe Discovery Project said:
aimossy
Senior Member
- Messages
- 1,106
The Microbe Discovery Project team thanks you!
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.
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.
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.
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.
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
The Microbe Discovery Project said:Brilliant news - the grand total from our crowdfund effort is now in, and it's fabulous!
A large donation was recently received - along with other generous donations - taking us well over the $220k mark.
We have received donations from 25 countries and raised an exceptionally large amount of money for this research into the gut microbiome of people with ME/CFS!
Thanks so much to all of you around the globe for supporting this project and donating. Thank you for getting behind this team of patients and these researchers at Columbia - and for getting behind biomedical research!
We are at the end of our patient crowdfunding team effort, but rest assured, we will be bringing you more information from Columbia about Dr Lipkin and Dr Hornig's plans with what needs to happen.
Drs. Lipkin and Hornig will be writing shortly to thank the community and to say how they will apply these funds to advance the microbiome science of ME/CFS.
We are looking forward to Dr Lipkin and Dr Hornig's new findings being published and shared from previous work they have been doing in 2014.
"....our research team has recently discovered differences in markers of immunity and metabolism in ME/CFS that may relate to disturbances in the gut microbiome. Details will be published in 2015. We look forward to sharing these findings with the ME/CFS community." - Dr. Lipkin and Dr. Hornig
Image credit: www.canstockphoto.com
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Ember
Senior Member
- Messages
- 2,115
Fun fact: Kickstarter raised $212,962 with 2,593 backers for Canary in a Coal Mine. But Kickstarter and Amazon payments take about 7-10%.
Congratulations to our patient crowdfunding team.
Congratulations to our patient crowdfunding team.
Esther12
Senior Member
- Messages
- 13,774
Thanks a lot to all those involved in working on this. A million dollar target was always going to be demanding... my key tip for life is "aim low". You got four times my target of 50k!
Hope it didn't take too much out of you all and you were able to enjoy picking up some new skills too.
How much of the cash are you taking for an end of campaign party?
Hope it didn't take too much out of you all and you were able to enjoy picking up some new skills too.
How much of the cash are you taking for an end of campaign party?
Hi Esther--I can say this much, we are taking 0 for a party
None of us have ever actually met one another!