Category Tag: advocacy

Voices from Sacramento: Janet Dafoe and Ashley Haugen

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Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME.  Dr. Dafoe's son and Ashley's brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally ...

Thank Senator Markey for Sponsoring the Congressional ME Briefing

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Back in February 2017, Senator Ed Markey (D-MA)  publicly announced at a packed town hall meeting that he would advocate for ME. A few short months later, he did just that! His first act as an ME advocate was to sponsor a Congressional Briefing on Capitol Hill on May 18th ...

CA Senate will Vote on Resolution for ME/CFS Thursday – Call your Senator!

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California - A resolution to proclaim May as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Awareness (ME/CFS) Month will go before the California Senate this Thursday. Now, is a great time to educate your California Senator about ME/CFS, and let them know that you are a constituent who cares about this cause. Even ...

Support Tom’s London Marathon campaign for ME Research U.K.

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On 23rd April, Tom Whittingham is running the London Marathon for ME Research UK. Watch and share his fundraising and awareness video ...

#MEAction and Solve ME/CFS Gear Up for Major Congressional Push

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#MEAction and Solve ME/CFS Initiative are gearing up for a major congressional action for ME/CFS in Washington, D.C. from May 16 to 18. If you would like to join us in Washington, D.C. for meetings, let us know by April 4th so that we can make the necessary meeting arrangements with ...

IL. House of reps shows support for ME

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The plight of people living with Myalgic Encephalomyelitis (ME) was heard in Illinois this week. The parent of a young daughter with ME, Amy Mooney, worked with her state representative, Michael J. Zalewski, to introduce a state resolution that recognizes ME as a tragic, disabling disease, and that commits to improving the availability ...

The Cut

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Are you prepared for an 18% reduction in ME spending? I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, ...

Join the webinar tomorrow: 6 Ways to Maximize Your Congressional Impact.

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Join SolveCFS for their first advocacy webinar on "6 ways to maximize your congressional impact." Thurs., March 2, 10-11 a.m. PST SMCI Advocacy and Engagement Manager, Emily Taylor, will lead the webinar, which is the first in Solve's advocacy webinar series: "Power to the Patients." To register for the free webinar, go here: ...

Thank Senator Markey for promising to help ME patients

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On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed Markey (D-MA). Around 1,400 constituents were present in both the main auditorium and the overflow room where the event was live streamed. I was one of the few who got to ...

U.S.

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U.S.: Join us for a training on bird-dogging with Paul Davis, National Advocacy Coordinator for Housing Works on Sunday, Feb. 19 at 2:30pm E.T. The call will run for 90 minutes. The focus of this training will be on how to speak truth to power and protect (to the best of our ...
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