Hope Happens Here: Paralysis Resource Center (PRC)

Posted by Reeve Staff in Daily Dose on September 04, 2020 # Hope Happens Here

Cheri Hopper expected exactly nothing when she reached out to the Paralysis Resource Center (PRC) for help in July 2002.

In the year since she'd sustained an incomplete T4 injury during a routine visit to the chiropractor, Hopper had become increasingly defeated as she struggled to find anyone who could—or would–help her navigate a life turned upside down. Days and weeks and months passed as she spent hours on the phone with state agencies and non-profits, seeking guidance about complicated insurance coverage, catheters that weren't delivered on time, and doctors who didn't know how to treat patients with spinal cord injuries.

"You're flying blind, and you don't know what to do," she says. "People would say, "You have a what? What do you want us to do for you?" Well, I have no idea. This is my first spinal cord injury."

When Hopper discovered the PRC, it had been open just a couple of months. She was skeptical but desperate, and so she filled out a form requesting help: Would she like to speak with someone? (Yes!) When would be a good time for a call? (Monday!)

She hit send and thought that was the end of that.

"I knew they weren't going to call," she says.

When the phone rang that Monday and Hopper heard information specialist Bernadette Mauro on the other end of the line, she choked up.

"I was absolutely stunned," she says. "There was this person who called me back and actually cared. I felt like someone turned the light on. I felt like I had a chance."Chris & Dana at the opening of the PRC

Dana Reeve created the Paralysis Resource Center for the millions of people like Hopper—and the Reeves themselves– who faced a black hole when seeking information and support as they fought to regain their lives after spinal cord injuries.

"When Chris was first injured, there was very little out there that we could turn to," Dana said in 2005. "It didn't seem like there was one place where we could call and ask five different questions that seemingly had nothing to do with one another."

The idea for the PRC developed as the Reeve Foundation initially rooted itself in advocacy efforts around a cure and began to build a community across the country; Dana realized the foundation was the obvious answer to providing the critical support missing for families in their day-to-day lives.

"Who else if not us?" she said.

Dana died just four short years after the PRC opened, but the astonishing scope and impact of its work remain her living legacy.

Since 2002, more than 101,000 people have received information and assistance from its information specialists; over $30 million in quality of life grants have seeded the work of local non-profits throughout the U.S, helping to improve the lives of people living with paralysis; and its vast resource library, from the comprehensive Paralysis Resource Guide to fact sheets and booklets on topics ranging from the coronavirus to autonomic dysreflexia to parenting with a disability, has been translated upon request into more than a dozen languages, including Arabic, Japanese and Tigrinya, a language spoken in northern Ethiopia and southern Eritrea.

Information specialist Donna Lowich said the urgency of the PRC's work was evident from the start.

"In the early days, the phone rang all day, every day," Lowich says. "There was a pent-up need for the PRC. As soon as it opened, everybody wanted to get information. People were calling from everywhere. Indiana, Florida, California. It was amazing."

The dozen staffers—including four librarians–tracked the questions they were getting and, from there, began to build a place where the community could come for answers.ribbon cutting ceremony of the PRC with Chris and Dana and others

Scouring nursing manuals, academic journals, and healthcare newsletters, the team expanded its focus to encompass not only paralysis related to traumatic spinal cord injuries but stemming from medical conditions like strokes, spina bifida, and multiple sclerosis. Guidelines on how to choose a rehabilitation center and what to expect when first coming home were created alongside fact sheets tackling deeply personal issues that mattered most in daily life, including bowel and bladder management, and sex after an injury. An ever-changing and comprehensive state-by-state list of local resources helped connect callers with support networks in their own community.

"Our hope was that we would provide them with good resources so that they would continue to come back when they needed us," says Mauro, one of the original information specialists and now the PRC's Director of Information and Resource Services. "That was the goal. We wanted them to know we were here for them for life."

Cheri Hopper, who had expected so little, became the PRC's 55th client. Like so many others before and after her, the first call led to a second and a third until she'd returned to the PRC dozens of times for guidance and support.

But it is the first call, and specifically the kindness and strength in Mauro's voice, that Hopper says she will always remember.

"She saw me as a person, and that gave me back a part of my life that I felt like I'd lost," Hopper says. "When somebody listens to you, you realize you have an ally, and you're not just fighting by yourself. After that, I knew I had people behind me."

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.