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Celebrating the 2018 Successes of Our U.S. State and Local Advocacy Groups

As the year comes to a close and we look over all that we have accomplished, we know that we could not have done this without the amazing work of our #MEAction U.S. state and local advocacy groups. These groups are the foundation of our work as they build support, spread awareness, and advocate for the millions with myalgic encephalomyelitis (ME). We cannot say thank you enough to all of our activists and volunteers across the country!

Below are some of the amazing accomplishments of some of our local state groups, including Georgia, Texas, Pennsylvania, New York and Florida. Join the advocacy work of your #MEAction state and local advocacy group. Search here beneath national, regional and local groups. 

Georgia

Georgia joins the #MillionsMissing protest on May 12th, 2018.

In 2018, #MEAction Georgia began hosting 2 meetings (virtual) per month — One devoted to advocacy, the other devoted entirely to support.

#MEAction Georgia was able to organize 3 rallies for #MillionsMissing across the state. Utilizing an app called Marco Polo, the group established support, advocacy and networking groups that greatly enhanced communication among group members.

Continuing to spread awareness in the community, Jes Gordon partnered with The Founders improv ensemble to host an Improv Variety Show, Improv for M.E., as a fundraising event to benefit #MEAction Network and Unbarred Theater.

On the CDC front, #MEAction Georgia advocates, Wilhelmina Jenkins and Dr. Arnold Berry, attended the CDC Roundtable on Medical Education and ME/CFS, and Dr. Arnold Berry made sure that ME was on the agenda for the 2018 annual conference of the Georgia Academy of Family Physicians.

Texas

#MEAction Texas was able to meet and personally thank US House Representative Beto O’Rourke for supporting and signing our ME/CFS Appropriations letter.

In the summer,  advocates met with US House Representative, Michael Burgess, in his district office to discuss ME/CFS clinical care needs, plus several conference calls were arranged with health legislative assistants in DC, including both Senators Cruz and Cornyn.

Looking ahead, Austin advocates held planning meetings for a 2019 Unrest screening.

Pennsylvania

#MEAction Pennsylvania had a state leader, Carly Goldberg, come on in October and they have already had their first group call. The PA Team is excited for 2019 and looks forward to building a community, educating and empowering people with ME and allies to take on manageable actions. They are also creating a “Spoonie’s Guide to Activism and Social Change” resource.

New York

New York Senator, Brad Hoylman (center) attends the protest to lend support to people with ME. #MEAction activist Terri Wilder, left, spearheaded the protest. 
Photo by Michelle Wild.

#MEAction New York had a very busy 2018 and had a lot to show for it. First, activists worked with the New York State Department of Health to launch an ME webpage, and In New York, activists were successful in getting articles about ME published in “Family Doctor: A Journal for the NYSAFP” and in the “Monroe County Medical Society.”

Next, there was the New York State Senate and Assembly ME resolutions, and a listening session with New York City Council Health Chair on the needs of the community.

#MEAction New York held multiple screenings of Unrest for CME credit. One was in collaboration with the New York State Department of Health, where Health Commissioner, Dr. Howard Zucker, attended and gave opening remarks. The other was in collaboration with the New York City Department of Health where the Deputy Commissioner of Disease Control, Dr. Demetre Daskalakis, moderated.

The #MillionsMissing protest in NYC was very well attended and they have held frequent virtual meetings with ME activists around the state.

Also, they have worked with elected officials to post supportive statements and information about ME  (i.e. NYC Council Chair, Corey Johnson, Senator Brad Hoylman, etc) and worked with the New York City Department of Health and Mental Hygiene to post information about ME on their social media in an effort to raise awareness.

Finally, they led the Per Fink Protest at Columbia University in the fall!

Florida

Orlando gathers for the #MillionsMissing demonstration.

#MEAction Florida had a ton of amazing outreach to local political offices in 2018. Even more exciting, there were a lot of people doing first-time advocacy work and a handful of wonderful people took up the torch! Seeing this action, warmed the heart and fired up the State Leader! They saw lots of social media outreach for all of their efforts throughout the year and made a TON of new friends. The Florida Facebook group is just a dozen folks shy of 200 members, which is incredible. Dawn Holt down in Miami has taken all kinds of initiatives to bring the PwME in that area together through virtual and real face-to-face visits. She’s brought the Miami/Broward area ME/CFS support group to Facebook through video!

For 2019, Dawn is also on her way to organize a #MillionsMissing in Miami, so the hope is to have two in Florida next year! Plus, #MEAction Florida is working on screenings of Unrest with the understanding it can take a while for things to materialize.

Support our advocacy work! Please consider making a donation to #MEAction this year, and help us ring in the new year on another strong footing. If you are unable to donate – and we completely understand – please share our work with your family, friends and social media circles. 

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Categories: Advocacy, All News, Awareness, Community, Featured news, Florida, Georgia, Local advocacy, New York, United States

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2 comments on “Celebrating the 2018 Successes of Our U.S. State and Local Advocacy Groups
  1. Rivka says:

    Fantastic work! What an amazing community we have. Thank you for all your dedicated hard work.

  2. Justin Reilly says:

    wonderful! Been particularly amazed by NY and Mass advocacy efforts coordinated by Terri Wilder and Rivka Solomon, respectively!! pls keep up the amazing work!!

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