Since launching in 2002, the Christopher & Dana Reeve Foundation Paralysis Resource Center (PRC) has provided direct counseling and assistance to more than 100,000 individuals and families.
The PRC, a free, comprehensive, national service for individuals living with paralysis and their caregivers, was co-founded by Christopher and Dana Reeve based on their personal struggle to locate a centralized resource and establish a new normalcy following his spinal cord injury.
The PRC is now funded through a cooperative agreement with the US Department of Health and Human Service’s Administration for Community Living (ACL) to help those living with paralysis to achieve and maintain independent, engaged, and fulfilling lives.
“The Paralysis Resource Center is the first call that many families make when their loved one has been diagnosed, and the program serves as a vital lifeline to help people navigate the daily realities and long-term challenges of paralysis,” says Peter Wilderotter, president and CEO, Christopher & Dana Reeve Foundation, in a media release.
“Christopher Reeve once said, ‘Hope is like a lighthouse,’ helping individuals who are lost in the darkness find their way. The resources, support, and community created by the PRC serves as the foundation of hope for thousands of individuals impacted by paralysis around the country and even across the globe.”
The data collected from the 100,000 individuals and families help to inform the creation of new programs and materials so that the PRC can continue to provide the most comprehensive resources. These insights are also used to educate the public and policymakers on the realities and needs of the greater paralysis community.
Some of the data include:
- Twenty-five percent of inquiries made to the PRC are from caregivers supporting a family member living with paralysis and six thousand were from healthcare professionals.
- Fifteen percent of requests are from individuals living with paralysis for less than a year.
- Spinal cord injury represents 43% of the total inquiries made to the PRC, but other top causes of paralysis include stroke, cerebral palsy, traumatic brain injury, and multiple sclerosis.
- Over 60% of PRC requests come from the US, with California, Florida, New York, New Jersey, and Pennsylvania as the top five states.
- In 2002, the PRC’s first year, there were 5,272 inquiries, and over the years, that number has nearly doubled with 9,897 recorded in 2018.
- Over 200,000 copies of the PRC’s signature publication, Paralysis Resource Guide, have been distributed and is a staple in hospitals and rehabilitation facilities.
- Men are twice as likely to request support which reflects the higher prevalence of paralysis and spinal cord injury that exists among men.
- Over 5,750 individuals sustained their spinal cord injury as a result of a motor vehicle incident. The others main causes include falls (2,709), sports/recreation activities (2,636), and victim of violence (1,325).
The frontline of the PRC are the Information Specialists, a team of certified staff members who provide personalized support to individuals living with paralysis, as well as their family members and caregivers. Information Specialists, some living with paralysis themselves, are trained to answer any question related to paralysis and can respond in over 170 languages through the use of interpreter and translation services.
However, many individuals and family members impacted by paralysis require ongoing support. The PRC’s Peer & Family Support Program, a national peer-to-peer network, fosters lasting, deep-rooted relationships by pairing certified peer mentors with fellow community members in need of continued guidance. Since 2011, over 12,000 peers, either living with paralysis or as a caregiver, have received mentoring from 384 peer mentors in 42 states, the release adds.
“Dana Reeve compared the first weeks and months of life after paralysis to trying to land on another planet without a map. Reaching this milestone—100,000 community members served—reflects Dana’s powerful and lasting legacy as the key architect of the Paralysis Resource Center,” shares Maggie Goldberg, chief operating officer, Christopher & Dana Reeve Foundation.
“Thanks to the support of the Administration for Community Living and prior partnership with the Centers for Disease Control and Prevention, the PRC has expanded its free programs and extended the reach of its services to ensure that all individuals, whether newly diagnosed or living with paralysis for some time, have the guidance and resources they need to live a healthy life with greater independence and community integration,” she adds.
Additional programs within the PRC include a Quality of Life Grants Program, which helps fund nonprofit initiatives across the country. It also offers a Military and Veterans Program, which features an online community and an inventory of educational resources.
For more information, visit Christopher & Dana Reeve Foundation.
[Source(s): Christopher & Dana Reeve Foundation, PR Newswire]