Advocacy Week Kickoff Event with Rep. Jamie Raskin (MD-08)
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!
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 (MD-08).
In 2020, Rep. Raskin introduced H.R. 7057, The Understanding COVID-19 and ME/CFS Subsets Act, the first piece of legislation to authorize funding from the National Institutes of Health (NIH) for ME/CFS research and education.
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.
This year, Solve M.E. 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 issues brought to the forefront by Long COVID have a direct impact on our communities. That’s why it’s so important that we come together to amplify our voices on Capitol Hill. Members of the Long COVID Alliance have 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.
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.
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!