Donations to ME Research

[Gingergrrl]

I actually tend to alternate and don't have a standing donation for anything. I donate often to OMF and various projects that they do and always donate to the charity (when listed of known) of our fellow sufferers who have passed away. I probably won't announce it beyond that in this thread for my own comfort level but I think this thread is a great idea and I like to learn of new opportunities for donations in the future so I can alternate them.

 

[rosie26]

Just set up small but reoccurring donations to the OMF and Lipkin/Hornig

I do a monthly donation by direct debit to InvestInMe and don't even miss it!

Pam

I have a monthly standing order for the research fund of the Irish ME/CFS Association.

Can't stop smiling. I remember years ago being so thankful for those ME's who were out there advocating and I was in bed so ill and unable to do anything at all. You guys cheered me up.

Go research, lets get some good findings - more researchers interested... more studies...

 

[AndyPR]

Has been posted elsewhere but I thought it would be good to add this amazing news to this thread as well.

An amazingly generous $100,000 anonymous donation has come through!
This is wonderful news and such a fantastic start! We are now up to 148 donations and a total of $112,651 for this critical and hugely thorough study into ME/CFS by Dr. Ian Lipkin and Dr. Mady Hornig at Columbia University Center for Infection and Immunity!

This massive study, with well characterized patients and controls includes investigating the microbiome (viruses, fungi, bacteria), pathogens, metabolomics, proteomics, immunology, genetics and epigenetics – all on the same patients. This is a unique chance to solidify findings, find out more and see correlations across research areas. It is an in-depth study that is also looking at the big picture, many research papers and hypothesis would be generated from this work which covers critical areas of research need for ME/CFS.

The study is designed to home in on ME/CFS – please read about the whole research study HERE!

More at http://microbediscovery.org/2016/09/05/great-news-a-big-100000-donation-we-have-some-total-updates/ or to donate http://bit.ly/DonateToDrLipkin

 

[mango]

According to their newsletter this week, RME (the Swedish ME Association) has decided to donate 50 000 SEK (approx 5235 EUR or 5840 USD) from their research fund -- money that has been donated by members etc -- to Open Medicine Foundation!

 

[rosie26]

Fantastic to hear a $100.000 anonymous donation has been made to Dr. Lipkin and Dr. Hornig at Columbia University. Thanks so much to this wonderful donor. I will donate a bit more than usual today to Columbia in thanks to you.

Also great to hear of the $50.000 raised in Sweden and the Swedish ME Association directing that money to one of our very good research studies.

Thanks for updating this thread @AndyPR and @mango

 

[Tuha]

Thanks for opening this topic - I think it´s very important to speak about. We need to speed up ME research. When there is no federal funding - the patients/families/friends donations is the only way. Once there will be enough evidences about the biological cause of ME, I am sure that also big federal agencies like NIH will jump on with their big money. But now it´s up to us. I send donations regulary

I wrote it several times that many small donations bring few big donors. I followed some big crowdfunding campaigns and it was always that 500 donors brought around $2 mil. You can see that not many people joined this effort. Imagine if more people like 10 000 would join and would donate regulary to ME research. So we need to speak more about the importance of patients donations in our personal ME community and encourage our friends and family members to do it. Few days ago I spoke in my small ME community about this posibility (around 100 people) and I was surprised that almost noone think about this possibility. Not many but some people said that they will start to support ME research regulary. If everyone brings 2-3 new donors - we can easily increase the number of donors

 

[paul80]

I've donated to the norwegian rituximab trials when they were asking for funding and to lipkin's project. I also set up a monthly donation to OMF.

Agreed tuha we need to keep talking about it constantly or people just forget.

 

[rosie26]

Thanks for opening this topic - I think it´s very important to speak about. We need to speed up ME research. When there is no federal funding - the patients/families/friends donations is the only way. Once there will be enough evidences about the biological cause of ME, I am sure that also big federal agencies like NIH will jump on with their big money. But now it´s up to us. I send donations regulary

I wrote it several times that many small donations bring few big donors. I followed some big crowdfunding campaigns and it was always that 500 donors brought around $2 mil. You can see that not many people joined this effort. Imagine if more people like 10 000 would join and would donate regulary to ME research. So we need to speak more about the importance of patients donations in our personal ME community and encourage our friends and family members to do it. Few days ago I spoke in my small ME community about this posibility (around 100 people) and I was surprised that almost noone think about this possibility. Not many but some people said that they will start to support ME research regulary. If everyone brings 2-3 new donors - we can easily increase the number of donors

I agree @Tahu

We have a great opportunity now to speed things up by donating to research. We just need to keep spreading the word to donate as you and others have been doing. Lets beef research into ME up like never before. Exciting times.

 

[rosie26]

I've donated to the norwegian rituximab trials when they were asking for funding and to lipkin's project. I also set up a monthly donation to OMF.

Agreed tuha we need to keep talking about it constantly or people just forget.

@paul80

One of the reasons I started this thread was because I forget to donate and thought having a thread like this would remind me to donate more often. I forget to take my tablets, have to think really hard what day it is when I wake up in the morning, to name just a few. So I really need reminding about donating as I have too many other things I also need to be remembering.

 

[aimossy]

https://twitter.com/i/web/status/778135531171504128

 

[Gingergrrl]

Thanks again for this thread, Rosie, and my parents are sending their yearly donation to OMF as we speak! I still alternate mine to different places and don't have anything on automatic deduction.

 

[rosie26]

Thanks again for this thread, Rosie, and my parents are sending their yearly donation to OMF as we speak! I still alternate mine to different places and don't have anything on automatic deduction.

Lovely of your parents, thank you for sharing that. And also thanks for all the donations you have contributed.

 

[daisybell]

I've just donated a small amount again to IiME through sponsoring Mike's marathons.
www.justgiving.com/mikeseumarathons
I think he is amazing - he's running a marathon in every EU country to raise funds for Invest in ME. He has a friend with ME. He's also doing interviews and raising awareness in each country. As far as I know he is covering all the costs himself. So I like to support both his extraordinary effort and Invest in ME!

 

[Ben H]

Hi Guys,

i know this is on a slightly different level but some great news- $260,000 (two separate donations) were recently given to OMF! Plus $30,000 fundraised!

As you guys are very proactive on this front i thought you'd like to know.

You can check the details in the newsletter here:

http://forums.phoenixrising.me/inde...ons-plus-30-000-fundraised.47317/#post-773743

Thanks,


B

 

[rosie26]

@Ben Howell Thanks for updating this thread with such fantastic news.

And huge thanks to these wonderful people who donated such generous amounts to OMF. It is so deeply appreciated by us all. Thank you so much.

Also thanks to all who are donating when they can, where they can.

 

[Ben H]

@Ben Howell Thanks for updating this thread with such fantastic news.

And huge thanks to these wonderful people who donated such generous amounts to OMF. It is so deeply appreciated by us all. Thank you so much.

Also thanks to all who are donating when they can, where they can.

Its the smaller donations that keep OMF going...but its incredible news when something like this happens as it accelerates the whole process and enables much!

Thanks for all your support!


B

 

[Jo Best]

I've just donated a small amount again to IiME through sponsoring Mike's marathons.
www.justgiving.com/mikeseumarathons
I think he is amazing - he's running a marathon in every EU country to raise funds for Invest in ME. He has a friend with ME. He's also doing interviews and raising awareness in each country. As far as I know he is covering all the costs himself. So I like to support both his extraordinary effort and Invest in ME!

Oops, sorry daisybell, I didn't mean to hit post reply, so will just add hear hear!

 

[Jo Best]

Thanks for starting this thread @rosie26

I'm co-founder of the Let's Do It for ME campaign, which set out in the summer of 2011 to crowdfund the Invest in ME Research Centre of Excellence (translational biomedical research).

Donations may be made to specific projects, currently the Invest in ME Research on Gut Microbiome, B-cells leading to a UK trial of Rituximab, and Medical Students' direct involvement with biomedical research. Links to the projects are on this page of the charity's new microsite for the Invest in ME Research Centre of Excellence for ME -
http://future.cofeforme.eu/ce-research.shtml

 

[rosie26]

Thanks for starting this thread @rosie26

I'm co-founder of the Let's Do It for ME campaign, which set out in the summer of 2011 to crowdfund the Invest in ME Research Centre of Excellence (translational biomedical research).

Donations may be made to specific projects, currently the Invest in ME Research on Gut Microbiome, B-cells leading to a UK trial of Rituximab, and Medical Students' direct involvement with biomedical research. Links to the projects are on this page of the charity's new microsite for the Invest in ME Research Centre of Excellence for ME -
http://future.cofeforme.eu/ce-research.shtml

Hi @Jo Best Thanks for posting this and would appreciate updates on how things are going with funding for each study.

I am very interested in the research into the microbiome in ME. I will be making my next donation to Invest in ME very soon.

 

[Jo Best]

Hi @Jo Best Thanks for posting this and would appreciate updates on how things are going with funding for each study.

I am very interested in the research into the microbiome in ME. I will be making my next donation to Invest in ME very soon.

I'll try to remember to update this thread on the funding Rosie (my memory is terrible). Currently..

Gut Microbiome - £175k raised of £200k target -
https://www.justgiving.com/fundraising/gutmicrobiome

B-cells/Rituximab - £497k raised/pledged of £520k target -
https://www.justgiving.com/fundraising/ritux4meuk