Fighting for Equitable Treatment for ME Patients
Inspired by yet another round of egregious actions of the US Department of Health and Human Services against myalgic encephalomyelitis (ME) patients, MEadvocacy.org was launched a year and a half ago. We have approached advocacy in a creative way, utilizing technology to our advantage. In particular, for our website, we’re using the NationBuilder platform – a technology purpose-built for advocacy.
Since our last fundraiser, we have:
- Represented ME at both the House and Senate NIH Budget Appropriations meetings this past April.
- Contacted key members of Congress and their staffers were contacted in person and by phone.
- Disseminated specially prepared information packets were distributed to key members of the Appropriations Committees.
- Conducted two successful demonstrations in Washington DC. One in March and the other in April of this year. Patients were represented by university students who wore the patients’ pictures and read off their bios at the Mall.
- Issued 2800 letters to Congressional representatives via the One Click app.
- Posted 18 blogs outlining our activities as well as pertinent information and news crucial to the community.
- Raised awareness about NIH's misinformation about the denial of funding to scientists trying to study ME.
- Testified at the CFSAC August 2015 meeting both orally and in writing.
- Grown our membership - we currently have 1,180 members.
- Revamped our home page has a whole new look. The aim is to appeal to newcomers and those in the general public who have very little knowledge, if any, of ME.
We plan to once again participate in the Budget Appropriations process starting early in 2016. This time we will be addressing the CDC as well as the NIH, so that a repeat of this past year’s attempt at deletion doesn’t recur because the powers that be don’t think that ME is serious or worth consideration.
We will continue our efforts to spread ME awareness outside of the “patient bubble” and into the general community. We believe this is crucial to get a critical mass that will have positive results for ME patients.
Who Runs This Site and What Does It Cost
Our funds for website operations, raised a year ago, are starting to run low. As the membership has grown, so have monthly operating expenses. In particular, we desire to run the One Click Politics app every month, instead of just 3 to 4 months out of the year, in order to keep up the pressure on Congress.
So now it’s your turn to step up to the plate.
If you believe this website is a valuable resource and wish for us to continue assisting patients and stakeholders like you with advocacy and awareness for ME, please donate.
Our goal is to raise $2300, which will keep the site running for the next 12 months*
*As per our agreement with May12.org, our fiscal sponsor, 10% of that amount will go to May12.org to cover accounting costs. As May12.org is a 501(c)(3) non-profit, all donations are tax deductible.
Both sites are run by patient volunteers, with none of the waste on salaries, buildings, and overhead associated with the large patient organizations. We are not affiliated with any government agency, and operate independently.
Our goal is to raise $2300 by Sunday, October 18, 2015 at midnight Eastern Daylight Time.
Matching Donations, ME Wristbands and More...
A generous donor has pledged to match the first $1,000 in donations, so donate now and double your amount!
If you make a donation of $50 or greater, you will receive 2 ME wristbands as shown in the photo (kitten not included).
In addition, if you make a donation of $1 or greater, you can submit a name for the kitten pictured.
The kitten’s mother was pregnant when rescued by one of our volunteers. The young male pictured is the lone survivor of that litter. He’s a real fighter and needs a name.
Make your suggestion in the comments section below this blog article. Names submitted without a donation will not be considered.
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Spoon is a great name! Also Ramsay or Crowhurst.