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Reeve Foundation Launches Support Groups for People Affected by Paralysis

Reeve Foundation Launches Support Groups for People Affected by Paralysis
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The Christopher & Dana Reeve Foundation has launched virtual support groups for people living with paralysis — either due to multiple sclerosis (MS) or other conditions — and their caregivers.

Paralysis in some or all limbs occurs in MS and other neurological disorders, often exacerbating feelings of social isolation, even before the global COVID-19 pandemic.

“The feeling of isolation is common for many individuals who have been diagnosed with paralysis, and the COVID-19 pandemic has not helped this sense of seclusion,” Bill Cawley, director of the foundation’s Peer & Family Support Program, said in a press release.

“However,” he added, “COVID-19 has shifted the way the world connects, and distance is no longer an obstacle. We can utilize this ‘new normal’ and create a safe space for people to connect with others who understand what they are going through and gain support, insight and guidance.”

Although the global pandemic has led to a surge in telemedicine, which may ease aspects of medical care in the long run, the forced and prolonged isolation due to lockdowns and other pandemic safety measures have contributed to feelings of loneliness and hopelessness.

The Reeve Foundation’s new virtual support program seeks to alleviate this stress.

The “Living with Paralysis and Caring for a Family Member Living with Paralysis” program will host three types of support groups to help patients and caregivers connect with peers who understand the daily challenges involved in living with paralysis.

The three groups are targeted at those living with paralysis of the legs (paraplegia), those living with paralysis of all four limbs (quadriplegia), and family members and other caregivers.

The free sessions will take place twice a month on the Hey Peers video and chat platform. People can register on the site for each hour-long meeting, which will host up to 15 participants and cover topics from heath challenges and nutrition, to traveling and dating.

A professional and a community member facilitator will collaborate in guiding each session. They will lead the conversations and help participants share their stories, as well as suggest new topics.

The program is a part of the Reeve Foundation’s National Paralysis Resource Center and builds on the work and experience of its Peer & Family Support Program, which has provided those living with paralysis, along with their family members and caregivers, with a network through which to share their knowledge and experience.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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