Hope and Healing program connects donor family, researcher
CHICAGO – “You were the last person to touch my Jennie,” Pam Thurman said, pulling University of Illinois-Chicago researcher Dr. Ali Djalilian in for a tearful embrace.
Pam and her family drove from their home in Battle Creek, Mich., to Eversight Illinois to share her daughter’s unique donation story. Born with cystic fibrosis, Jennie spent her life contributing to research projects to study the antiviral medications that added years to her life. You have to crawl before you can walk, she would tell her family, and she hoped her research contributions would help other CF patients live longer, healthier lives.
When Jennie passed away in 2012 – surrounded by 36 family members and loved ones singing “Amazing Grace” – her greatest fear was that she wouldn’t be able to give back by becoming a donor. When Pam received the call from Eversight Michigan telling her Jennie was a candidate for donation for research, she felt ecstatic.
“It wasn’t just one person she was going to touch with those eyes, it was thousands,” Pam said. “She would have loved that.”
Jennie’s corneas went to support Dr. Djalilian’s research into the applications for limbal stem cells to regenerate damaged cornea tissue. The project, which has received multimillion-dollar grant funding from the Department of Defense, will allow a single donated cornea to restore sight to multiple people and improve patient outcomes.
“This research, which will change the lives of thousands of people, is only possible because people like Jennie give this amazing gift,” said Gregory Grossman, Ph.D., Director of Eversight’s Research Program.
The meeting between Jennie’s family and Dr. Djalilian was the first of its kind for an Eversight donor family. Family members shared their favorite memories from Jennie’s generous life – Jennie’s grandmother buying her an electric bike so she could accompany her family on motorcycle rides after her double lung transplant; Jennie falling in love; Jennie writing individual notes to everyone in the hospital room in the final hours of her life. Photo books and the laminated notes helped illustrate Jennie’s short, yet remarkable life.
At Eversight Illinois, family toured the office and added Jennie’s name to the donor memorial wall before traveling to the UIC’s Lions of Illinois Eye Research Institute to meet with Dr. Djalilian. There, they heard about his research and toured the lab.
They also presented Dr. Djalilian with a t-shirt from their annual motorcycle fundraiser: Through Jennie’s Eyes, and a rocker pin to leave him with a piece of Jennie.
Eversight is developing a grant-funded program – Hope and Healing – to facilitate increased communication between donor families whose loved ones donate to research and the researchers who use that tissue for their work.
“Our Research Program seeks to maximize the impact of donation on finding new cures and better therapies for those with blindness and vision loss, giving hope to millions,” said Alex Teska, Community Relations Liaison. “The Hope and Healing program will provide a source of healing and pride to families who experience the loss of a loved one and help researchers gain a deeper understanding of the people who give the gifts that make their work possible.”
For Jennie’s family, who have become champions of donation and research in her memory, the meeting was cathartic.
“We’re all so proud of Jennie and everything she did in her life and beyond,” said Colleen Austin, Jennie’s grandmother. “To be here and see the impact Jennie is making is simply amazing.”
View more photos from the event on our Facebook page here.