Darcy Tannehill (EdD '09) was diagnosed in 2012 with light chain amyloidosis, a rare disease caused by the production of abnormal protein (called amyloid) in the body. She underwent a bone marrow transplant that same year, but the battle didn't end there. Amyloidosis is an ongoing and relentless condition, and Darcy is currently completing her twelfth round of chemotherapy.
Throughout her own battle, Darcy has remained passionate about amyloidosis research, education, and support, as "I found that there were few answers and many questions," she said. "I had to research information on my own and find my own support systems."
According to Darcy, there is no treatment for her disease, but instead they "borrow treatment from multiple myeloma," which often includes chemotherapy and bone marrow transplants. Still, 80 percent of those diagnosed with light chain amyloidosis will not survive more than one to two years, and few live longer than six to eight years.
"Until recently, nothing was being done for amyloidosis locally, and with time of the utmost urgency, I needed to do something to change that situation," she said.
Darcy made a gift to the Department of Medicine at the University of Pittsburgh's School of Medicine, establishing the Dr. Darcy B. Tannehill Amyloidosis Research and Education Fund.
Darcy worked at Pitt early in her career and received her doctorate degree from the School of Education, additionally her late husband's family has a long lineage of Pitt alumni. But personal connections aside, Darcy felt that Pitt was the only place she could trust with such an important mission.
"Pitt is the only institution in our area that is capable of doing this important research," she said. "It was not acceptable to me that people from the amyloidosis community did not view Pittsburgh as a go-to place for amyloidosis care. I needed to work to change that reality and perception."
Darcy's gift will help Mark Gladwin, MD, chairman of the Department of Medicine and director of the Pittsburgh Heart, Lung, Blood and Vascular Institute at UPMC and the University of Pittsburgh School of Medicine, and his team to conduct groundbreaking Amyloidosis research that will translate into cutting-edge patient care.
"We are honored to have the opportunity to work with Darcy to advance UPMC and the University of Pittsburgh research and clinical efforts to improve the lives of our patients suffering from Amyloidosis," Dr. Gladwin said. "We are entering a new era where advances in testing has helped our clinical experts diagnose this disease earlier and our understanding of the mechanisms that cause this disease has presented new targets for research and treatment."
In addition to this generous contribution, Darcy has also made a planned gift to ensure that her hard work will be continued. She hopes that her gift helps Pitt to become a powerhouse in amyloidosis research, ultimately helping to save many lives.
"Rare diseases are often ignored with little funding. Patients slip through the cracks," Darcy said. "We need research for treatment and a cure."
Darcy also supports amyloidosis awareness in many other capacities. She is on the Board of Directors for the national Amyloidosis Foundation, and in 2016, she started a local fundraiser with her daughter – the Pittsburgh Amyloidosis Research Benefit. This year's event will be held October 26, 2018. She hopes to begin a local amyloidosis support group in the near future.
"The selfless efforts of patients like Darcy have played such an important role in supporting research that has advanced our understanding of Amyloidosis and helped develop new therapies that are currently being tested," said Prem Soman, MD, PhD, director of the University of Pittsburgh and UPMC Multidisciplinary Cardiac Amyloidosis Center. "We are so grateful for her philanthropy. This is an exciting time for patients and their families, physicians and researchers, and everyone in the field, with real therapeutic hope just around the corner."
Editor's Note: Darcy Tannehill passed away on April 21, 2018, after courageously and passionately battling Amyloidosis for six years.
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