By Kendra Carter
For Diane Redington, taking charge and taking care of others came naturally.
The second oldest of seven children with a dedicated 45-year career as a nurse and nurse practitioner, Diane worked myriad leadership roles in healthcare, from hospitals and insurance industry to community clinics helping underserved populations.
“She was always in charge, no matter what,” her sister Jayne Hawe says. “If you had a problem, it became Diane’s problem, and she was going to help you fix it.”
So in April 2015 when Diane was diagnosed with a Stage 4 gynecologic carcinosarcoma (GCS), a rare, aggressive cancer with little research support and a dire prognosis, her first instinct was to find a way to help other women battling the same disease.
“After Dee went online to research her diagnosis, she was devastated,” says Diane’s brother, John Redington. “I remember talking with her and hearing that every website with information about GCS said it was terminal, it was fatal or that there was very little hope. Diane couldn’t accept that. She said if she could bring the right people together, it was an opportunity to bring more awareness to this terrible cancer.”
Determined to find expert physicians, better treatments and, ultimately, a cure for GCS, Diane rallied her husband, family and friends to obtain key opinions form prestigious gynecologic oncology centers across the country. This eventually led her to Michael J. Birrer, M.D., Ph.D., at Massachusetts General Hospital where she decided to get her care. In conversations with Dr. Birrer and with support from her family and friends, Diane decided to create The GCS Project, a non-profit organization aimed at supporting innovative cancer research, advocating for GCS patients and providing education to physicians, patients and families. They also launched the GCS Project website as a home to patient education, support and community for women who are facing the same rare condition and their families.
Through this website and its patient forum, Hawe says, Diane became connected with women all over the world seeking answers and community.
“She spent probably 30 hours a week answering emails and encouraging women who had also received this diagnosis,” says Roy Buchta, Diane’s husband of 36 years and treasurer of the GCS Project. “All of the information online about GCS was written for doctors and researchers, but there wasn’t much for a general or patient audience. She wanted information out there to be more hopeful and accessible beyond the scientific and medical aspects of the disease.”
Scientists know little about GCS, and, because it’s a rare cancer, there is little reliable clinical data.
In 2016, Diane asked Birrer, now director of the O’Neal Comprehensive Cancer Center at UAB, about the lack of research into GCS. Birrer told her frankly that philanthropic giving is what allows scientists to pursue discovery in little-researched diseases.
“I asked him how much money, and Dr. Birrer said that for $300,000, he would be able to launch a research initiative that would use existing technology to investigate the GCS tumor,” Diane wrote on the GCS Project website. “It was then that we decided to raise $300,000 to support targeted research in GCS. Dr. Birrer was willing to provide the brainpower, and I knew I could raise the funds.”
They successfully met that goal and funded the first research into understanding the genetics and epigenetics of GCS. Now, this project is almost done and will provide valuable information about the genomic structure of carcinosarcomas. The results will likely inform the creation of key important clinical trials for these patients.
The GCS Project board is still actively fundraising to support research at UAB and other institutions across the country conducting research into GCS. Buchta says the board works in consult with Birrer and its newest member Rebecca C. Arend, M.D., assistant professor of Obstetrics and Gynecology at UAB and associate scientist in the O’Neal Comprehensive Cancer Center, to find targeted research and investigators they can help support.
A Path Forward
Nearly three years after her initial diagnosis, Diane passed away on March 15 2018.
After her passing, that same group of family and friends Diane gathered to create the GCS Project are continuing the organization to honor her memory.
“Diane poured so much of herself — her drive and her passion — into the GCS Project,” says Kathryn Wilt, Diane’s longtime friend and secretary of the GCS Project. “Those of us left behind feel honored to keep this going, to do the best job we can to help find answers that could lead to better treatments and a cure for this horrible disease.”
Buchta says carrying on the GCS Project is worthwhile, not only because it is a fitting tribute to Diane, but because it’s a way to help other women and their families.
Beyond continued fundraising for research, Buchta says the board is working to establish Centers of Excellence in GCS, finding institutions in the United States and the United Kingdom that are well-versed in the best standards of care in treating GCS patients to help make better treatments more geographically accessible.
“Diane was fortunate because she had the ability to go a lot of places to advocate for her best care,” says John Redington, GCS Project president. “We want to continue her quest to establish these Centers of Excellence so that those women who can’t travel across the country might have access to quality care for GCS closer to home.”
John Redington says the board plans to see this project through and will continue to set up the organization so it can grow and outlast the lifetimes of its co-founders.
“Our long-term goal for the GCS Project is a cure. There’s a lot of crawling to do before we can walk, but if we can support more discovery into the workings of this cancer, help in establishing standard treatment protocols so all GCS patients receive quality care across the board, and see women diagnosed with this disease are able to live longer with a good quality of life, we will have accomplished a great deal.”