Paralysis Resource Center, Helping Patients With ALS, Receives 5-Year Grant
The Paralysis Resource Center (PRC), a comprehensive support program for people with paralysis, received a multi-million dollar grant over five years from the Administration for Community Living (ACL), part of the US Department of Health and Social Services.
In effect since July, the cooperation agreement between the two runs until June 2026 and includes a price tag of $ 8.7 million for its first year. The PRC has been managed by the Christopher & Dana Reeve Foundation for 19 years.
The PRC is said to be the only national program that directly serves the estimated 5.4 million U.S. residents living with some form of paralysis. Its services are free for those who need it.
In addition to people with amyotrophic lateral sclerosis (ALS), the center welcomes patients with stroke and those suffering from multiple sclerosis, spina bifida, spinal cord injury or cerebral palsy. As ALS progresses, the body gradually becomes paralyzed, with patients having difficulty speaking, swallowing, and ultimately breathing.
PRC works in partnership with the ACL to fight against social isolation while pursuing parity and inclusion in the health of patients and their families. It offers both information on disorders and accidents leading to paralysis, and a centralized space for practical and emotional support. These grants will expand the PRC’s offerings.
“It is a privilege to work alongside ACL to deliver on our promise to provide care today. Tomorrow’s Cure for our community, ”Maggie Goldberg, President and COO of The Reeve Foundation, said in a press release.
“The PRC is the preeminent resource for anyone diagnosed or living with paralysis, providing the necessary care and information early on on their journey through the daily challenges of an independent and fulfilling life,” added Goldberg. “Our services are here to help everyone affected by paralysis manage health issues, emotional well-being and ultimately find a new normal.”
The centre’s services and resources include information specialists, who are typically the first PRC contact for newly injured or diagnosed patients. They can answer questions in 170 languages and have counseled some 108,000 patients. The 442-page CPR Paralysis Resource Guide is widely used by hospitals and rehabilitation facilities nationwide and is available free in electronic or hard copy format.
Additional resources are the Peer and Family Support Program, a nationwide network of more than 470 certified mentors in 41 states providing peer-to-peer connections to patients and their families, and the program for military and veterans, where the military have access to dedicated support resources. regardless of when they served or the cause of their paralysis.
Its Quality of Life Grants program supports nonprofit initiatives in all 50 states and Puerto Rico, and has awarded more than $ 34 million to nearly 3,400 community efforts. In addition to funding other community activities, such as adapted gardening, the program helps with skills training, transportation, abuse prevention and financial management.
Another PRC program is virtual support groups to compensate for isolation through enhanced peer connection. These groups are led by professional facilitators and trained peer mentors living with paralysis.
Community education through webinars and other means is also available, and the center hosts an extensive library of resources that has been translated into over 12 languages.
“The CRP is a vital resource for the paralyzed community,” said Patricia Volland, Chair of the Quality of Life Committee of the CRP Board of Directors. “Through its various programs, resources and publications that address the distinct needs of people living with paralysis and their caregivers, the CRP helps people with tools to live their lives to the fullest.”
“The PRC enables millions of families affected by paralysis to lead independent lives and participate fully in their communities. We continually value our partnership with ACL, Reeve’s Advocates and Members of Congress who support our mission and make it all possible, ”added Volland.
The Reeve Foundation, which also supports research into the treatment of paralysis and the care of those affected, was established by actor Christopher Reeve, paralyzed in an accident in 1995, and his wife Dana. He opened the PRC as “the supporting side of the Reeve Foundation’s twin missions to provide ‘the care of today’ and strive for ‘the healing of tomorrow’,” the foundation says on a webpage.