From a Solve email.
Advocacy Week is almost here!
The 5th Annual Solve M.E. Advocacy Week will take place from Sunday, April 18, 2021 to Saturday, April 24, 2021. Please join us for a week of advocacy activities that everyone can participate in from home!
Together, in one voice, we will fight for a stronger federal investment in research, education, and care for people with complex, chronic illnesses.
Help plan your best experience with our Advocacy Week 2021 Energy Guide
Save this email -- all of your Advocacy Week event details and energy guide are here to help you plan your best experience. All of our virtual events will be accessible with closed captioning, and you can also find more information at
www.MEAdvocacyWeek.com. All recorded events will be available within 48 hours on
Facebook and
YouTube.
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Friday, April 16 | 4pm PT / 7pm ET
Advocates Social Happy Hour
Just because we aren’t able to join together for Advocacy Week, doesn’t mean we have to be apart. Join this special Advocates Social Happy Hour as we honor two very special advocates with a surprise award! Bring your favorite friday night beverage and snacks as we gather together for friendship, solidarity, trivia and prizes! You won’t want to miss this!
HERE IS YOUR LINK TO JOIN THIS ZOOM EVENT on APRIL 16 at 4pm PT / 7pm ET
Monday April 19 | 10am PT / 1pm ET
Advocacy Week Kickoff Event with Rep. Jamie Raskin
We’re thrilled to announce that our kickoff event will take place on Monday, April 19, at 10 am PT/ 1 PM ET, featuring a virtual keynote address by our community champion, Representative Jamie Raskin.
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Raskin will be joined at the event by Maryland Secretary of Aging and Solve M.E. Board Member Rona Kramer, disabled registered nurse and patient expert Ashanti Daniel, BSN, RN, and Sarah Bekins Tompkins, Rare Disease Legislative Advocates (RDLA) Advisory Committee Member and EDS patient advocate.
FOLLOW THIS LINK TO JOIN THIS ZOOM EVENT on APRIL 19 at 10am PT / 1pm ET
Tuesday April 20
Advocacy Day
This year’s keystone event is Advocacy Day, on Tuesday, April 20. This VIRTUAL event connects you, and hundreds of other advocates like you, directly with your members of Congress using personalized online conversations.
If you are one of the 900 registered Advocacy Day participants, you’ll receive your training materials and personalized Online Portal link by email on Wednesday April 14.
Not registered? No problem! There’s still many actions you can take. Visit
www.MEAdvocacyWeek.com and click the REMOTE ACTION KIT for fun, easy, and low-energy ways to take action from your phone or social media account. Using the REMOTE ACTION KIT, you can
- Take 15 minutes to call your Members of Congress with our easy form
- One-click social media actions and shares
- 3-minute customizable e-mail messages to your Representatives and Senators
- Show your support for your 900 volunteer advocates and make an extra splash on social media with new GIPHY stickers
- And, share the REMOTE ACTION KIT with your friends!
VISIT
www.MEAdvocacyWeek.com and use the REMOTE ACTION KIT
Wednesday April 21
Social Media Action Day and Press Event
Every Wednesday at 12pm PT / 3pm ET is the weekly #MEAwarenessHour on Twitter. Wednesday, April 21 will be extra special because we expect a big announcement from our Congressional friends!
Be the first to know and join the conversation on FACEBOOK, TWITTER, and INSTAGRAM using #StopTheLongHaul.
Help us boost the signal and make our voices on Capitol Hill even louder on social media on April 21! Don’t forget you can use the REMOTE ACTION KIT for one-click social media actions and shares!
VISIT
www.MEAdvocacyWeek.com and use the REMOTE ACTION KIT
Thursday April 22
3rd Annual EmPOWER M.E. Roundtable:
Elevating Your Voice In Research
What happens when government agencies can’t adequately include and represent patients in the research process? If widely inclusive outreach and recruitment practices are cost-prohibitive, how can patients demand inclusion and ensure their voices are heard?
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In this hour-long virtual roundtable, patient advocates and citizen scientists share their experiences in navigating the world of research and clinical studies and how to make your voice heard at every level of research. Learn how to overcome barriers to equitable access and get involved in quality research opportunities. You’ll also get a preview of the latest ME/CFS and Long COVID data and insights from the patient-centered
You + ME Registry and Biobank and the real cost of chronic illness and rare disease in America.
Don’t forget special guest and keynote remarks from Representative Don Beyer, author of the COVID-19 Longhauler Act.
Join us on April 22 at 10 am PT / 1 pm ET for a lively, patient-centered discussion.
When:
April 22 at 10 am PT/ 1 pm ET
Registration is not required. For more details, visit our
Facebook event page. Join the Zoom on April 22 at
http://go.solvecfs.org/e/192652/j-8...h=qAe-1qRZ8A4eczTJa2OdnHsiIOhsWyE_RYAi1yBV69E
Friday April 23
3rd Annual EmPOWER M.E. Roundtable:
Breakout Sessions & Office Hours
The best part of the EmPOWER M.E. Roundtable is YOU, and the EmPOWER M.E. event just isn’t the same without your insights, opinions, and problem-solving. We are providing these additional virtual ZOOM office hours as an opportunity for folks to ask questions, privately and 1-on-1 with the panelists from the EmPOWER M.E. event, to replicate the experience of meeting speakers and roundtable discussions at an in-person event.
Stay tuned after the EmPOWER M.E. Roundtable on Thursday for information about ZOOM Breakout Sessions and panelist conversations on Friday, April 23.
