• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

#TRIPLETUESDAYOMF -TRIPLE YOUR IMPACT FOR A CURE!!!

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
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IS


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Today we are excited to launch Triple Giving Tuesday OMFwhich will run from today, Tuesday, October 17 through Tuesday, November 28.

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Wonderful, caring, and compassionate OMF supporters, Jack and Dilla Cosgrove and family, have graciously pledged a $100,000 matching gift to encourage world-wide support of Triple Giving Tuesday OMF. (Photo: Jack Cosgrove, Jill von Ebers, Chris Quinn and Linda Tannenbaum)

Chris shares with you why the entire Cosgrove Family has come together to support OMF. "10 years ago, in Baltimore, at my first ME/CFS conference, I struck a conversation with the person sitting next to me. She had a nice smile. Linda's daughter was sick. My wife was sick. We left the conference with no answers but we had found each other."

"Today Linda is helping OMF drive research that will find the cause and cure for ME/CFS. My family supports my wife Tracey every day doing our best to help her live a meaningful life despite this thing that has us in its grip. For the next 6 weeks, my family is your family. Together we raise hope and will win back our loved ones lives."

DONATE NOW: For every $1 you donate, the Cosgrove Family will triple your donation - - making "Giving Tuesday" our
Triple Giving Tuesday
#TripleTuesdayOMF!


With the generous matching grant your donations will be tripled and with $50,000 of your donations we will be able to raise $150,000.
Let's do it!

We invite you to join OMF to make this an amazingly successful fundraising, friendraising, and awareness campaign. Here is how you can get involved:

Make a donation of any amount. Every dollar donated will be tripled by the Cosgrove Family.
  1. Make a personal fundraising page and invite your family and friends to donate NOW to TRIPLE their donation.
  2. Host a fundraising event. Invite your family, friends, colleagues, and community to learn about ME/CFSand give them the opportunity to join you by donating to OMF for #TripleTuesdayOMF.
  3. Promote finding a cure by taking the message viral. Share OMF's hashtags and encourage others to support our revolutionary research on Facebook, Twitter and Instagram.
#TripleTuesdayOMF #GivingTuesdayOMF
#EndMECFS

5. Be creative and have fun!!!!
We invite you to be part of this global effort and provide hope to ME/CFS patients no matter where you live.
In advance, thank you for your support of research to find a cure.
JOIN US - GET INVOLVED TODAY!
With hope for all,
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Linda Tannenbaum
CEO/President
www.omf.ngo


An incredible opportunity once again!!!

Every donation gets tripled from NOW until November 28th!!!

Lets raise some serious funds for OMF and Prof. Davis's research :)

Thanks so much,


Ben

@Janet Dafoe (Rose49) @AshleyHalcyoneH
@marilynbsg
 
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NelliePledge

Senior Member
Messages
807
Hope you don't think I'm being pedantic but this bit of the forum is for research papers and discussions
Maybe move the thread to ME events or another area? Might get missed here
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hope you don't think I'm being pedantic but this bit of the forum is for research papers and discussions
Maybe move the thread to ME events or another area? Might get missed here

Hi @NelliePledge

I posted it here as some updates may reference some of the research being undertaken/where funding will go towards. Perhaps it should be in news, but I posted it here last year I believe with no complaints/problems. If a moderator sees this, please move it to the 'news' section of 'news and research'. Thanks.


B
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,984
Its likely members are tapped out, would a crowdfunding initiative reach more people, perhaps tied to Unrest if Jen is interested?
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Its likely members are tapped out, would a crowdfunding initiative reach more people, perhaps tied to Unrest if Jen is interested?

Hi @Alvin2

I am aware of this (being first and foremost a patient/member myself) but I feel it is important to keep the forum updated regardless of whether people can donate etc.

As for Unrest, I believe OMF are indeed working with Jen already, though I am unsure of the exact capacity. Any ideas feel free to email marilyn@omf.ngo.

Thanks,


B
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,984
Hi @Alvin2

I am aware of this (being first and foremost a patient/member myself) but I feel it is important to keep the forum updated regardless of whether people can donate etc.

As for Unrest, I believe OMF are indeed working with Jen already, though I am unsure of the exact capacity. Any ideas feel free to email marilyn@omf.ngo.

Thanks,


B
For sure, all of us hope Dr Davis figures this out (and soon), i'm just saying most of us are low income and precarious, so we can't give as much as we would like to, but there are many out there who could and have higher means then most of us if they can be reached. If you can tell her about the idea that would be great, i'm barely holding on, i can't deal with people professionally right now, i blew myself out yesterday going to the neurologist and i need a few weeks to recover before i can think straight
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
For sure, all of us hope Dr Davis figures this out (and soon), i'm just saying most of us are low income and precarious, so we can't give as much as we would like to, but there are many out there who could and have higher means then most of us if they can be reached. If you can tell her about the idea that would be great, i'm barely holding on, i can't deal with people professionally right now, i blew myself out yesterday going to the neurologist and i need a few weeks to recover before i can think straight

For sure I will pass it on. OMF do work on this, and have raised large donations from single donors, some anonymous, before. It's something that is being continually worked on.

Look after yourself and I hope you get back to
(or above!) baseline soon.


B
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Talking of tripling impact, what is the OMF response (if any) to this call for more co-operation from the NCBVR? (Last paragraph). You could at least commiserate with each other on not getting the funding, and discuss how to get it next time.

http://nvcbr.org/2017/10/10/nvcbr-s...-to-advance-diagnosis-and-treatment-of-mecfs/

@msf

I'm not sure why you felt the need to use a loaded word like 'commiserate' but a couple of points:

1.) It was not OMF who didn't get the funding, it was Stanford/ SGTC

2.) OMF in conjunction with Stanford has taken unprecedented steps to sharing data with specific functionality built into the website that allows viewing of data from all of OMF/Stanford studies-I believe-for any researcher: http://endmecfs.stanford.edu/index.php

So OMF have already taken steps for this in the aims of curing the disease faster. I read the statement from NCBVR and unless I am mistaken it was a generalised point, and did not mention OMF specifically. I can't see any reason why the researchers there could not have access to the data as and when it comes available-thus rendering their request granted!

(And I agree-the more sharing, the better).

EDIT: I have just found out that Dr DeMeirleir (of NCBVR) and Prof. Davis have met several times and Dr DeMeirleir has presented his ideas to Prof. Davis's team.


B
 
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msf

Senior Member
Messages
3,650
Because I like to use descriptive language? Thanks for the answer and the clarification anyway - a lot of people on this forum seem to have been under the same impression, that the OMF had their own request rejected.
 

CFSTheBear

Senior Member
Messages
166
Unfortunately this won't let me donate via PayPal despite it being offered as an option - just asks me to fill in card details as if I'm using a credit card.