Reeve Foundation’s Paralysis Resource Center Given 5-year Grant

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by Marta Figueiredo, PhD |

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The Administration for Community Living (ACL) reaffirmed its support for the work of the National Paralysis Resource Center (PRC) in aiding people with paralysis — either due to multiple sclerosis (MS), accidents, or other disorders — with a five-year grant.

Under a collaborative agreement, the PRC — operated by the Christopher & Dana Reeve Foundation since its creation in 2002 — will receive a first-year award of $8.7 million from the ACL, an agency of the U.S. Department of Health and Human Services.

The PRC and ACL began working together in 2013 to improve life for the 5.4 million Americans living with paralysis through efforts aimed at promoting health and quality of life, and encouraging greater community engagement.

“It’s a privilege to work alongside ACL to deliver our promise to bring Today’s Care. Tomorrow’s Cure to our community,” Maggie Goldberg, Reeve Foundation’s president and chief operating officer, said in a press release.

“The PRC is the preeminent resource for anyone diagnosed with or living with paralysis, bringing care and information needed from the start of their journey through the day-to-day challenges of living an independent and fulfilling life,” Goldberg added. “Our services are here to help everyone impacted by paralysis navigate health issues, emotional well-being and, ultimately, to find new normalcy.”

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PRC services and programs include teams of certified, trained information specialists to answer paralysis-related questions, given by phone or email, in 170 languages; a peer and family support mentoring program, offering peer-to-peer connections; a military and veterans program to support the unique needs of this patient population; and a quality of life grants program.

Through its quality of life grants, the PRC provides financial support to nonprofit organizations in all 50 U.S. states and Puerto Rico for projects that promote inclusion and community engagement, and further the health and wellness of those affected by paralysis. Since 1999, more than $34 million in grants have been awarded to nearly 3,400 community projects.

The PRC added another service to its list this year: virtual support groups. These are meant to counter the social isolation often felt by people affected with paralysis, and to promote greater connections among patients, caregivers, and relatives who understand the daily challenges of living with paralysis.

Separate group meetings are held for people with paralysis of the legs, those with paralysis of all four limbs, and for family members or caregivers to help them with the needs and challenges of each group. Meetings are led by a mental health professional and a peer with lived experience.

PRC also offers a number of educational resources, translated into more than a dozen languages.

“Through its various programs, resources and publications that serve the distinct needs of individuals living with paralysis and their caregivers,” the PRC “empowers millions of families impacted by paralysis to lead independent lives and fully participate in their communities,” said Patricia Volland, chair of the quality of life committee of the Reeve Foundation’s board of directors.

“We are continuously appreciative for our partnership with ACL, Reeve advocates and Members of Congress who support our mission and make this all possible,” she added.

The Christopher & Dana Reeve Foundation was started by the actor Christopher Reeve, who was paralyzed in an accident in 1995, and his wife Dana. The foundation opened the PRC to better address the needs of people living with paralysis worldwide.

Christopher Reeve died in October 2004 at age 52, and Dana Reeve, an actress, died in March 2006 of lung cancer at age 44.

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