Hope Happens Here: Julie Neustadt

Posted by Reeve Staff in Daily Dose on August 12, 2022 # Hope Happens Here, Commitment

When Julie Neustadt heard about the spinal cord injury research symposium happening near her Chicago home, she saw a chance to connect with scientists and share the urgency of her upended life.

The year before, in August 2003, Neustadt had sustained a T4 spinal cord injury in a swimming accident, and imagining her reshaped future still felt impossible.

She’d missed her son’s first day of kindergarten while in the hospital; when she returned home, she could no longer simply jump out of bed to make breakfast or climb the stairs to comfort Adam or his 7-year-old sister Laura when they woke in the night. The life Neustadt lived before the injury, the days that brimmed with happy activity, seemed lost.

“I didn’t see any way it was going to work,” she says. “I felt like if I could just speak up and tell somebody about my situation – ‘We’ve got to fix this! I’ve got little kids to raise!’ – if they could just understand what I had to do...”

But at the symposium, as people just like her, with families of their own, spoke about the paralysis they had lived with for years, Neustadt realized spinal cord injury research was nowhere near the finish line; her story wouldn’t accelerate the progress so desperately needed — but her support might.

“It was a reality check,” she said. “But it gave me impetus to know how much more needed to be done.”

Slowly and steadily, she got to work.

This fall, Neustadt will receive the Dana Reeve Hope award – presented to a person who has shown amazing grace, strength and fortitude – at the Magical Evening gala for her decades-long effort to advance research and improve the lives of people living with spinal cord injuries. From serving as a Christopher & Dana Reeve Foundation board member and peer mentor to establishing the Foundation’s support in the Chicago area, Neustadt’s contributions have helped foster a sense of community for families affected by injuries and raise millions of dollars for innovative research across the country.

Jeannine Simao, Reeve Foundation Director of Major Gifts, praised the quiet attention and thoughtfulness that Neustadt brings to every endeavor.

“She’s perceptive, she listens, she cares,” Simao says. “It’s never about her. It’s about finding treatments that can help everyone. Julie does not want the attention, but she deserves to be celebrated for all she has done, and continues to do, for the Foundation and the community.”

In the early years after the accident, Neustadt gradually began to recapture her sense of self; it was not easy.

“When I first came home from the hospital, I would see pictures around the house of my previous life and I didn’t feel like that person existed anymore,” she says. “There had to be this other process of reclaiming her: ‘Yes, she does exist.’ But for a while, it’s just a blow to the very core of your identity.”

The injury had been traumatic; while swimming in a Missouri lake, Neustadt’s spine was shattered when a teenager jumped into the water from a ledge above her. One moment, she’d been swimming toward her young family — in the next, the use of her legs was gone.

As she recovered, tremendous support from her husband, Jon, and family and friends helped carry her forward. But Neustadt worried about them, too.

“I knew people around me were so sad for me and I didn’t want to cause any of them any more pain, so I just felt like I had to pull through this,” she says.

Driving helped her regain her independence and, eventually, Neustadt was busy zigzagging around town to sports practices and volunteering as a room parent and Girl Scout Troop leader. When Laura wanted to try cheerleading and the squad needed a coach, Neustadt raised her hand.

“I couldn’t kick my legs, but nobody cared,” she says.

All the while, even on the tough days—and there were tough days – Neustadt shared her energy with the Reeve Foundation. She partnered with board member Kelly Heneghan to organize galas, comedy nights, and research-focused events like the one that had inspired her to act years before. She joined the Foundation’s board and, eager to support programs that improved life for the wider community, became a dedicated reader of Quality of Life grant applications. She spread the word about the invaluable support given by the National Paralysis Resource Center to her own family and volunteered to be a peer mentor herself.

“I thought that was something I could contribute, to give people a view that life does go on,” she says.

This summer, Neustadt celebrated her daughter’s wedding, a day of joy. She rocked out on the dance floor to her favorite 80s songs and reveled in the moment – even as some part of her wished to be on her feet.

“Do I wish I could’ve been dancing without a wheelchair? Yes, I still do,” she says.

And so, she continues to push for progress, while living with hope.

“The work Reeve does is so important,” Neustadt says. “Paralysis is at the center of my life. If Reeve can help propel the research forward and give somebody else hope that this is not a life sentence, I want to be part of that.”

Julie Neustadt will accept the Dana Reeve Hope Award at the Reeve Foundation’s annual gala on November 10. For more information and tickets, click here.

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.