USA: News from #MEAction

#MEAction has announced an official membership program.

Announcement on twitter (with a short video):

Code:

https://twitter.com/MEActNet/status/1435634990717538312

More details on website:

Membership starts at $5 a month. Free membership is also available to those who can't make a financial contribution:

 

Merged thread (MEAction funding)

eta:
https://www.fordfoundation.org/the-...ches-first-ever-us-disability-rights-program/

 

When I clicked that link it didn't seem to match the announcement being discussed. Not sure what happened...

At any rate, here's a link from the Ford Foundation website:

https://www.fordfoundation.org/the-...ches-first-ever-us-disability-rights-program/

I saw a video clip of Rebecca Cokley discussing this yesterday (see tweet in quote below) but I did not realize that one of the grants was for MEAction!

 

Webinar: “Double-Edged Sword of Research for BIPOC"
Thursday, Nov. 11th, 5:30-6:30 PM Pacific Time.

Speakers are Jaime Seltzer from MEAction and Leticia Vaca from Urban Health Group Wellness.

Register here: https://www.eventbrite.com/e/double-edged-sword-of-research-for-bipoc-tickets-189318214877

Edited to add: BIPOC stands for "Black, Indigenous, and People of Color."

 

There are some good questions submitted jointly by ME Action and Solve in the link above. I’ll repost the link to just the letter here.

https://www.meaction.net/wp-content/uploads/2021/10/NIH-telebriefing-questions-Oct-2021.pdf

 

Hope it goes well!

 

Copied post
I was unsure about the directness of the MEAction campaign, how it's pretty much prescriptive and may be badly received in a "who are you to tell us how to deal with this?" way but see a lot of praise and thanks in hindsight, pretty much for how simple it is. It's not that simple and it's not all of it but this is still the best we have for now, even 18+ months into it.

This is one but frankly I see many regularly. Kudos on this, sometimes it's OK to be bold when you are on the right side of history, even if it irks some at first.

https://twitter.com/user/status/1453058599178153991

 

Merged thread

#MEAction: strategic planning survey 2021

from email


We're excited to share that #MEAction is engaged in a strategic planning process facilitated by the Center for Nonprofit Management (CNM) to help us determine our strategic way forward. An initial step in the process is to gain input from YOU, our incredible #MEAction community! Through the anonymous survey at the link below, we would be grateful for your input. It is our goal to understand your knowledge and perceptions of #MEAction’s programs, impact, and future.

This survey is anonymous and should take approximately 10 minutes to complete. Only CNM has access to the responses, and individual answers will not be reported. We are looking for trends and consistent perceptions. Your honesty is truly appreciated!

Take the Survey

deadline Nov 8

 

Signed. There were questions about donating and I've ran into the same problem at MEAction as I did at other venues that do fundraising for ME, the only option to donate is through creditcard. In the Netherlands we rarely use creditcard. We have our own system called "ideal" which is very handy, but I don't expect foreign organizations to put that on the table as an option for us. Paypal however works too for most Dutch people but is rarely an option too.

 

Only five days to fill it in seems an unreasonably small amount of time to allow for pwME, does anybody know if this has been running for a while already?

 

I probably should have looked through the survey before starting, was OK for the closed questions, but when I got to the open ended questions it was beyond me just now.

As there was not an obvious save option I just dropped out of answering, though hopefully I will come back and restart when my brain is functioning better.

 

I think I read on Facebook that it can be filled after the 8th of November deadline. Will see if I can find the post again.

 

yes, same, so it took me longer than 10 minutes.

unfortunately it wont let me copy the questions to paste here.

 

Not a complaint but it seemed more like a recruitment and funding campaign than a genuine inquiry about what is important. It's not exceptional in those terms but it is sort of thing that puts me off, though I'd guess the psychology is based on tried and tested methodology.

 

That happened to me too, and I just skipped those questions after thinking, once again, how even ME organizations don't "get" severe ME.

 

Can't remember it all but I said something along the lines of support for local fundraising initiatives. I should've specified better though, because I mean something along the lines of basics that you have to do before you can start fundraising. And does this differ in different countries. I guess there's some licensing involved maybe?