Please consider donating to OMF's study of severely ill ME/CFS Patients

[Gingergrrl]

Below is a link from OMF's Facebook Page re: how to donate for their upcoming research study of severely ill ME/CFS patients. Please consider donating and no amount is too small!

Open Medicine Foundation
February 7 at 2:00pm ·
The End ME/CFS Project is sill looking for funding to launch its study on severely ill patients. Help us find answers by giving a donation of any size. Every penny counts. http://www.openmedicinefoundation.org/ways-of-giving/donate/

 

[nandixon]

It's such an obvious connection that I imagine it's already been mentioned, but I wonder if Angelina Jolie might be willing to help promote this given her relationship with Laura Hillenbrand?

 

[Gingergrrl]

@nandixon I believe this question re: Ms. Jolie helping our cause has been posed in other threads and I am afraid I do not know the answer!

But this project really needs our help with fundraising and is the first of its kind. They will be conducting and analyzing extensive testing on the most profoundly ill bed-bound ME/CFS patients with the belief that the most severely affected among us hold the key to discovering the mechanism behind this illness.

This is one of the best research proposals out there IMO and the scientists are motivated, incredibly smart and passionate about this cause. What they lack is the funding to move it forward and we can help with that!

Thank you to everyone for taking the time to read this post.

ETA: In an ideal world, this funding would be coming from the government but until that day arrives, we need to do what we can.

 

[Sparrow]

I've donated again. Thanks for mentioning.

This seems like such a clearly beneficial approach. I'm sure the sickest among us probably have more pronounced abnormalities than patients who are easier to get to testing, etc. I'm eager for this to get underway.

 

[Gingergrrl]

@Sparrow Thanks for donating and I know this project is going to do amazing things once they get the funding to start.

 

[oceiv]

Thank you, @Gingergrrl for giving this study on severe ME/CFS patients attention. Is there more info on this study on their site or is it just on Facebook? All I saw was the general "The End ME/CFS Project" on the site. Also, is there a way to earmark your donation for this specific study?

 

[Gingergrrl]

@oceiv I believe that they are in transition re: the website for the End ME/CFS project so I want to confirm this before I post it. I will also confirm how you can earmark a donation for this specific study. I will get the information for you and post it here tomorrow.

 

[oceiv]

Great. I will check then. I hope this study continues to get further attention.

 

[Gingergrrl]

@oceiv and @Sasha and to everyone else who asked me about this recently... here is the info straight from one of the heads of the project:

No matter how they donate, there is a place for them to indicate the Severe Patient Study. On the current website, www.openmedicinefoundation.org there is a donate button top right and they can click on that and donate via credit card or Paypal.

They can indicate it in the "Message to honoree". PayPal is set up for that and says Severe Pt Study/End ME/CFS.
Or they can put the message in the memo of the check.

Checks can be mailed to:
OMF
c/o Linda Tannenbaum
29302 Laro Drive
Agoura Hills, CA 91301

Thank you to everyone who has been asking me (@Gingergrrl) and I hope this info helps. Thank you so much to anyone who donates to this wonderful upcoming research project

 

[oceiv]

I will be donating to this study. As a currently housebound patient, this gave me hope during a stressful week. Thanks again, @Gingergrrl and thanks to anyone who has donated or is going to donate to the severe patient study. I will try to figure out how to make a signature (I'm new) and put a link to this thread in it, until the OMF site is updated,

 

[Gingergrrl]

@oceiv My pleasure and glad to help! Everything I posted is on the current OMF website so it would be great to share the link in your signature. Thanks for donating, too!

 

[oceiv]

Here is the info about this study, from Facebook. I'm quoting it here for people who don't like to (I usually don't) or have the energy to click through to Facebook. It sounds like it will be a very comprehensive study, if funded.

Open Medicine Foundation
January 30 at 2:00pm ·

The first OMF Scientific Advisory Board meeting in October concluded with a clear direction toward ending ME/CFS. Whatever biological abnormality causes the disease would most likely be stronger in those who are the sickest.
This first study will enroll 15-20 severely ill ME/CFS patients (largely bed/home bound). We will check many areas: genetics, genomics, pathogens, proteomics, immunology, gastrointestinal, metabolic/endocrine and brain/cognitive function. We are looking for the biological abnormalities that would explain the symptoms and debilitation. A recent Medscape article ( “Chronic Fatigue Syndrome: Wrong Name, Real Disease”) highlighted this study.
At this point, we need the funding to launch this study. Because the testing is so comprehensive, the study is expected to cost approximately $1 million (about $65,000 per patient). If you would like to donate toward this study and the End ME/CFS Project, you may do so at our website.
Donate NOW http://www.openmedicinefoundation.org/ways-of-giving/donate/

International donations are accepted.

 

[Gingergrrl]

@oceiv Thank you for posting that additional info about the study. You are awesome!

 

[Sasha]

I've donated to this before and will do again. I was thinking of getting a new signature so if they've got streamlined donation info I'll have one for them - otherwise, I'll wait a bit until they've been able to sort something out.

Signatures are a good way to spread the word here, I think.

 

[GracieJ]

@Gingergrrl Found it! Took a bit... I do think this is where I want my little pennies heading toward.