Solve ME/CFS: The 5th Annual ME/CFS Advocacy Week April 18-24, 2021

From an email from Solve.
>>>>>

The 5th Annual ME/CFS Advocacy Week will take place from Sunday, April 18, 2021 to Saturday, April 24, 2021.

To protect the health of our advocates and congressional representatives, ME/CFS Advocacy Week 2021 will remain virtual with remote access to all events.

ME/CFS Advocacy Week connects people with ME/CFS, their loved ones, advocates, scientists, clinicians and caregivers from across the country to demand more action and research funding, coordinate with other advocates, and share their unique stories with members of Congress, together in one voice.

The keystone event of ME/CFS Advocacy Week will be our virtual Washington, D.C. Hill Day on Tuesday, April 20, a full-day Capitol Hill storm during which hundreds of advocates connect with members of Congress and their staff.

We’ll be announcing our full schedule of events in the near future. Stay tuned!

 

Code:

https://twitter.com/PlzSolveCFS/status/1361752714888302593

Code:

https://www.facebook.com/SolveMECFSInitiative/photos/a.74987762107/10157871908807108/

 

Code:

https://twitter.com/PlzSolveCFS/status/1362462361005805571

 

From a Solve email.

Advocacy Week Welcomes Partners from Long COVID and Rare Disease Communities
The 5th Annual Solve M.E. Advocacy Week will take place from Sunday, April 18, 2021 to Saturday, April 24, 2021. This year, “ME/CFS & Long COVID Advocacy Day” welcomes our new partners from the Long COVID Alliance and the EveryLife Foundation for Rare Diseases to participate FROM HOME in this virtual event.



In 2021, the Solve ME/CFS Initiative has expanded our annual advocacy events in order to bring together advocates from many complex chronic illness communities, including: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long COVID, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), just to name a few. The Long COVID Alliance joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research that will address the challenges faced by “COVID long haulers” and related post-viral illnesses.

The issues brought to the forefront by Long COVID have a direct impact on our communities. This is why it is important that we come together to amplify our voices on Capitol Hill.

Working together with these patient-advocates, their loved ones, scientists, clinicians and caregivers from across the country will strengthen our collective call to action.

Together, in one voice, we will fight for a stronger federal investment in research, education, and care for people with complex, chronic illnesses.

Register for Virtual Advocacy Day today!
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. Just a few hours of your time can make a difference at the highest levels of government. We have accommodations for all levels of health, experience, and skill. No experience necessary — don’t miss this special opportunity!

To register for a virtual meeting with Congress, please visit http://go.solvecfs.org/e/192652/forms-wrhhmgk0az2gr2-/29dfst/193338074?h=yLuRiEDLSYdKW6igDQUwp11JW78wY-2aYNLteqyP05M.




Please visit http://go.solvecfs.org/e/192652/adv...h=yLuRiEDLSYdKW6igDQUwp11JW78wY-2aYNLteqyP05M for more information about additional events, online training and activities.

 

Make Your Voice Heard on Advocacy Day — Deadline to Register is March 23!
Don’t miss the 5th Annual Solve M.E. Advocacy Week, 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!

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. Just a few hours of your time can make a difference at the highest levels of government. We have accommodations for all levels of health, experience, and skill. No experience necessary — don’t miss this special opportunity!

To register for a virtual meeting with Congress, click here. Sign up by Tuesday, March 23!

 

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.

Click to expand image.


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.

Click to expand image.


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?

Click to expand image.


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.

 

From a Solve email.

The 2021 Advocacy Day Action Kit
Advocacy Week 2021 kicks off on Monday, April 18, and we have a comprehensive Action Kit to help you make the most of your experience. It’s a one-stop shop for all your virtual advocacy needs!



The Action Kit makes it easy to:

• Send an email to your representatives and senators
• Tweet at Congress
• Use our customized GIPHY stickers
• Spread the word about Advocacy Week and put pressure on Congress to pass the COVID-19 Longhaulers Act

Check out the Action Kit here.

 

I listened to the Rep. Raskin talk today—glad he is still an advocate. The whole segment was recorded and will be posted on YT.

I think they said that about 1000 people registered to do the lobbying tomorrow—that’s encouraging.

 

Now uploaded.

Code:

https://youtu.be/7D3dpWvZC1U

https://www.youtube.com/watch?v=7D3dpWvZC1U