Monday, January 12, 2015

PR Firm Will Spread the Word About ME

ME Advocacy, which patient advocate Mary Ann Kindel launched last spring, has raised more than $6,300 so far to hire public-relations agency Crowds on Demand to get the word out about ME. To meet the February goal of another $3,700, patients can donate by midnight January 21st. ME Advocacy’s plan is to raise $26,400 over the next six months, which will cover the PR firm’s costs of $4,400 a month.

With this money, Crowds on Demand will: organize and hire protesters at events; place articles in the media, from print and online to radio and TV; meet with policymakers in Congress to find champions for ME; help with fundraising.

Already, the PR firm has lined up interviews with several smaller media outlets and written a 60-second script for a radio commercial to be aired on Midwest health podcasts. 

Kindel, 51, a graphic and website designer from Cincinnati, Ohio, has been ill since 2000 with severe ME that’s kept her largely housebound.  She decided to start her advocacy organization because of the P2P and the IOM.  “It’s the latest iteration of government’s malfeasance, and most ME patients aren’t healthy enough to protest it themselves,” Kindel explains. “I want to shake things up from a different angle, to try what hasn’t been tried yet.  I believe we need a consistent effort by professionals to get the word out what ME really is, why it needs to be officially recognized, why we need an accurate ME definition, and why we need vastly increased federal funding for research, to be commensurate with diseases like MS.”

To donate to ME Advocacy to hire Crowds on Demand, click here.

Here is a letter from Adam Swart, CEO of Crowds on Demand, detailing what the agency will do for ME patients:  
With a strong Public Relations campaign, the fight to get ME recognized is an issue that we believe will resonate well with the American public.
Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high profile policy maker. To be blunt, most Americans don’t know the reality of ME! 
Hiring the innovative PR firm, Crowds on Demand, provides the opportunity to bring concerns about the NIH/CDC redefinitions to the public and get the issue the attention it deserves. The firm is known for an "outside the box" approach that has successfully assisted people and organizations in getting on the map. Unlike many firms, we do more than contact media outlets, we coordinate campaigns from the ground up involving lobbying, demonstrations and media relations. 
Crowds on Demand will contact media, arrange for interviews on high profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight. Moreover, we will assist in the fundraising process by helping to make strategic partnerships with influential organizations and donors. 
We have agreed to work for a heavily discounted rate of $4400 per month including all of these services because we believe in the cause (normally we would charge approximately $10,000 per month for such a campaign). Furthermore, we promise results within 6 months and promise a 50 percent refund if the organization is not satisfied. 
A PR campaign with Crowds on Demand will get the cause on the radar and help the organization raise substantial funds from a donor network. We have excelled in the past working to bring attention to non-profits. For example, Crowds on Demand has worked with a relatively unknown charity in Los Angeles that worked on homeless mental health issues. It was originally unable to fundraise much or get attention. Through its campaign with us, they substantially increased fundraising and got attention in the media. 
We want to bring our success to fighting the HHS’s ludicrous redefinition campaigns and getting ME recognized.