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Dystonia is a neurological movement disorder characterized by involuntary, sustained muscle contractions. These often cause twisting, repetitive, or abnormal movements and can be extremely painful, much like a Charlie Horse.

As an active advocate for dystonia, Lisa is the main contact and group leader of the Greater Cleveland Area Dystonia Support Group for the Dystonia Medical Research Foundation.

The DMRF is a 501(c)3 non-profit organization dedicated to serving all people with dystonia and their families. The DMRF’s Medical & Scientific Advisory Council is made up of dystonia clinicians and scientists who are among the most knowledgeable in the world and whose work is shaping neurology, neuroscience, neurosurgery, and related fields.

Postacute Sequelae of COVID is defined as a syndrome with ongoing, relapsing, or new conditions after documented or diagnosed infection with SARS-CoV-2. Currently, over 400 million people are estimated to have experienced Long COVID.

The result of so many being impacted by Long COVID has caused devastation to our global workforce and economy, not to mention individual and caretaker quality of life.

For the 23 million Americans who are impacted by Long COVID, gaining access to disability benefits and an effective treatment is the most important,” says Dr. Al-Aly. “Streamlining the process and decreasing wait times to support the people who need it should remain the government’s focus.”

The Long COVID Alliance is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.