caregiver

aim to meet with caregivers to explore relationships, socioeconomic factors, geography, and access to care. Once the data are collected and analyzed, findings will be shared with people living with SCI, their loved ones, and SCI professionals, and used to help address the unmet needs of caregivers.

“It’s crucial to give SCI caregivers the chance to voice their experiences,” advises Dr. Zanca. “In the struggle to find answers to a myriad of questions about how best to care for their loved one, the caregiver often feels alone, exhausted, and unsupported. We must learn exactly how to make the burden of care more manageable, so caregivers’ lives are not diminished.”

Lisa Peterson, whose husband, Dan, has lived with SCI since 2019, intimately understands the need for answers. “It wasn’t easy getting used to our life with SCI,” Lisa remembers. “Daily – sometimes hourly – I had to make snap decisions about Dan’s care at home without guidance.”

After receiving excellent care at Kessler Institute for Rehabilitation, Lisa and Dan wanted to give back. They focused their support on SCI research at Kessler Foundation. Based on her own experience, Lisa felt it was critical to address caregiver needs.

“I gained much of my practical knowledge from online SCI support groups and chat rooms. That support also gave me an inside view of the challenges my caregiver peers experienced,” Lisa says. “When given the opportunity to support the new study, Dan and I didn’t hesitate.”

Dr. Fyffe explains, “Lisa was instrumental in helping shape many focus group questions in our investigation. Her firsthand knowledge of learning to live with SCI is guiding our study.”

Lisa, who joined the Foundation’s Board of Trustees in 2021, recounts, “As I’ve learned more about the breadth and scope of Kessler Foundation research, I am overwhelmed by the considerable talent and unwavering dedication of the staff. I’m proud to support this study to help the SCI community. The results will have a profound impact on people with SCI and their caregivers.”

Your generosity transforms lives through innovative rehabilitation research.