Shining a Light on Movement Disorders, Advocating for Awareness and Access to Care: Andréa Merriam & Larry Gifford

WATCH TIME: 12 minutes

"I believe that awareness is key. To illustrate, envision opening the curtains to allow sunlight in. In the United States, there are over 40 million patients living with a movement disorder, along with their families and healthcare providers. Alone in the dark, isolated from resources and others in similar situations, it's a tremendous missed opportunity. Awareness becomes the act of pulling open those dusty curtains, letting sunlight in for people to connect, access information, and ultimately receive improved care and a better quality of life."

World Movement Disorders Day, held November 29, 2023, is an annual event to raise awareness about movement disorders which include Parkinson disease (PD), Huntington disease, ataxia, multiple system atrophy, progressive supranuclear palsy, and many others. The global effort on promoting awareness for this day of recognition in movement disorders is managed by the International Parkinson and Movement Disorder Society (MDS) and its partners. While there are approved treatments for movement disorders like PD, barriers still exist in gaining access to these treatments and other types of care.

Recently, in a discussion with NeurologyLive®, Andréa Merriam, the chief executive officer at the Parkinson & Movement Disorder Alliance (PMD Alliance) and Larry Gifford, the president and cofounder of PD Avengers, talked about the importance of awareness in the field of movement disorders in honor of the disease recognition day. The duo also spoke about the current unmet needs that still linger in the movement disorders patient population. In addition, Merriam and Gifford shared the ongoing efforts of both organizations in aiming to address the needs of these patients and raise awareness among the community.

During the conversation, the 2 experts spoke about how global efforts can address the exponential growth of movement disorders and combat the stigma associated with these conditions, especially in regions where misconceptions prevail. Additionally, they talked about some of the collaborative strategies that can be implemented to improve access to quality care for patients with movement disorders in the United States, given the limited number of specialists and the psychosocial aspects involved in clinical care. Merriam and Gifford also discussed the ways that grassroots initiatives and global networks can play a role in creating awareness, sharing resources, and advocating for change in the treatment landscape of movement disorders.

For more information on how to get involved in patient advocacy for movement disorders, click the link here or feel free to reach out to Larry Gifford by email here.