Report of Patient Donations & Expenses: MCWPA Fundraising - Meeting Member's Requests

Report of Patient Donations & Expenses: MCWPA Fundraising
(Posted by Muffin on behalf of MCWPA Fundraising Team Leader, Karen Ravitz. Note the Facebook Causes site makes our fundraising efforts transparent to all).

We are pleased to announce that we have received enough donations to issue a press release through a newswire announcing the next BIG biological finding in a published ME/CFS study.

I hope you joined us in contacting your local news media with the MCWPA press release announcing the XMRV macaques study.

Id like to take this opportunity to give you an informal accounting of where we stand concerning patient donations and expenses:

Donations (including Cafepress royalties) $14,923

Expenses (Ad, press release, website and other minor expenses) $11,505

Balance to be used for future actions $3,418


Based on the January member survey, our next goals include producing a Public Service Announcement (PSA), offering seed money to organizations to run a print ad in local newspapers. Other actions you voted for that have little or no cost will be coming soon: Doctors Need to Know, informing local physicians of the latest XMRV research; and sending letters to patient organizations that have also been linked to XMRV.

Thank you for your continued support. The MCWPA Team

Comments

Thanks for that Muffin. There can't be enough transparency, i like this.

Could you answer a question (it's not related to this post, it's just a coincidence, because i wanted to donate to MCWPA yesterday, but then didn't do it, because i had already donated to Pandora some days ago)? Donations through the Facebook cause go to Pandora, if i understood correctly. What exactly is MCWPA? Is it an organisation on it's own?
 
CAn I please request a better term be used instead of CFS/ME in the awareness campaigns? Example: maybe use neuro-immune disease as coined by the WPI? Or at least spell out myalgic encyphalamytis or chronic fatigue syndrome.

I'm not sure that anyone actually understands the abbreviation CFS, and with the recent GET news, I don't even think the term CFS is legitimate. It is basically Reeves disease in my opinion.
 
Thanks for all your hard work. Hope you can help the public understand the need for bio-medical funding for neuro-immune disease, and can help get funding to the WPI. Or maybe even raise wareness to the poor quality of the XMRV negative studies by the CDC.

Also, a suggestion about the CFS/ME. It is not easily understood to the public. Maybe use neuro-immune disease as coined by the WPI? Or at least spell out myalgic encyphalamytis or chronic fatigue syndrome.

I'm not sure that anyone actually understands the abbreviation CFS, and with the recent GET news, I don't even think the term CFS is legitimate. It is basically Reeves disease in my opinion.

Go muffin!
 
Thank you, muffin and MCPWA! Will you list this info along with a running balance and accounting on your site too. I'm not on facebook.

I would suggest that instead of going down the survey list from most to least popular, that you concentrate on the most popular choice: press releases on big biomed studies (ie you can do it more than once).

Wondering if anyone gets a salary? Looks like not which is great for patients as more can be done!
 
i am about to start GET tomorrow can you please let me know what the recent news is thank you
 
JOJO;bt4340 said:
i am about to start GET tomorrow can you please let me know what the recent news is thank you
I hope you're kidding! If not PM me and we can talk. hint: DO NOT DO GET unless you do not have ME ('CFS')
 
ME/CFS Worldwide Patient Alliance (MCWPA) is a patient-driven, Democratic Advocacy group. Meaning every single ME/CFS sick person has a voice in what is done by MCWPA. We ask for input, compile, put it all out for review and comments, and then ask all members to vote on what THEY want done. Everyone is a member and everyone has a voice and a vote.

MCWPA was the brainchild of Marly Silverman of Pandora and Tina Tidmore (she's here!). MCWPA is its OWN organization. We do use the PANDORA donation infrastructure to move ALL MCWPA donations through to MCWPA and we do so that those donating are able to write the donation off as a charitable donation on their taxes. PANDORA does its own thing and MCWPA does its own thing. ALL of us working and supporting MCWPA are volunteers. We also contribute financially as best as every ME/CFS sick person can.

MCWPA does advocacy through the media. Have a look at the 6 December 2010 Washington Post AD that we did and that probably caused a great deal of problems and heartburn for the US and UK governments. This is what we do. We use the media in every way possible to hit the policy makers, journalists, researchers, physicians, and public to get our messages OUT to the public.

Being very vocal and visual is what will help to put pressure on the governments to get us funding for research on ME/CFS and on the newly discovered third Retrovirus. Being vocal and visual also alerts and informs the list of people above, especially the public who are very unaware of what ME/CFS is or that a possibly deadly human Retrovirus is out there and their governments have failed to inform them of this Retrovirus (HIV is the second Retrovirus and causes AIDS). MCWPA and other advocates are doing their best to ensure that the public is aware of this Retrovirus. And we ALL are trying to get funding for great research organizations like Whittemore-Peterson Institute (WPI) so they can continue to work on ME/CFS and this third Retrovirus.

We all know we can not keep "preaching to the choir". Crying and lecturing each other for 30 years has gotten us nowhere. So, MCWPA takes care of that situation by being VERY vocal and visual. And we like "out of the box" ideas on being vocal and visual. Hit the www.mcwpa.org site, read and then go to our forum with your ideas. Any and all ideas are so very welcomed.
 
Justin: We do have enough donations now to get the big press release for the next major biomedical study that comes out. But we also must do things that are "free" and that everyone can do in a few minutes like responding to deadly Lancet "studies" or emailing certain people or organizations so that they KNOW we are out here and we are watching and mad as hell. The priorities list is very much in order I assure you.

Tina Tidmore (Usedtobeperky on this site) is the person with the answers. She is the coordinator and the brains. Tina is also an outstanding spokesperson and has given a number of interviews through the newspapers and radio because of our Washington Post Ad and the attention and stir it caused. That Ad was a very real "shot across the bow" to the governments and it scared them badly. We made public what the US Federal government probably did not want made so very very public using their own FDA and NIH studies. I would say that the Washington Post Ad was a "letter of introduction" to the governments that the millions of ME/CFS sick are out there, united and going to fight and keep fighting publicly. Very scary when millions of sick from all over the world are united and fighting eachother's governments - as we do on a daily basis.

For the very best and most accurate answers to your questions, please contact Tina either through Cort's site, through the MCWPA.org site, or via email at editor@claynews.net.

Please understand how difficult it is for all non-profits to get donations during bad economic times. Now add to this the fact that most of us ME/CFS sick are too sick to work and live close to the edge. This makes getting donations for MCWPA very hard and we must be ultra careful with the money we do get from our members. We waste nothing. And yes, on the Causes site is the running totals of what we have gotten in, what we have used the donations for, and we also keep updating everyone on how much more money we need to reach certain critical goals. The Facebook Causes site was used because of this transparency. I want to know where my donations are going, what they are being used for, etc and so did Tina Tidmore and all the rest of the team members involved. If I donate $200, well, that's money NOT going for food, electric bills, vet bills, etc and I want an accounting of where my donations go and how they are used. I think we (MCWPA) are pretty good about keeping track of the money and using it as wisely and effectively as possible. MCWPA really does go for the biggest bang for our buck.

Sorry, really tired but trying to answer questions about MCWPA so that people understand what this particular advocacy group does. Please hit www.mcwpa.org - the website is kept updated and has the good studies for easy reading and grabbing. Please also hit our Forum and give us ideas. There is no real "formal" membership. If you have ME/CFS or are a caretaker of someone with ME/CFS than you are a MCWPA member and your ideas, voice and votes count. Simple as that.
 

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