Patient Care

Retired Ithaca Teacher Raises Awareness of Organ Donation

Jul. 23, 2013
Marathon runner waits for new heart at Rochester’s Strong Memorial Hospital
Fred and Linda Knewstub live in Trumansburg, near Ithaca.

Retired Ithaca schoolteacher Fred Knewstub is still working to educate people; this time about the importance of organ donation. It’s an issue close to his heart, or more accurately, involves his heart. He is awaiting a heart transplant at the University of Rochester Medical Center’s Strong Memorial Hospital.

“It’s important to consider joining the donor registry, because there are so many people who need organs every day and people can save lives by making that decision,” said Knewstub of Trumansburg. He is an avid runner who once ran the New York City Marathon and twice participated in the Philadelphia Marathon.

Today, he suffers from cardiomyopathy, or weakening of the heart muscle, making it difficult to pump enough blood through the body. He was diagnosed in 2001 and Ithaca cardiologist Malcolm Brand, M.D., managed his disease for years. Knewstub continued running sometimes 25 to 30 miles each week until a few months ago, when his heart faltered.  

He was referred to URMC heart failure cardiologist Eugene Storozynsky, M.D., Ph.D., for specialized care.

“If it wasn’t for his marathon running and exercising, he wouldn’t have lasted as long as he did before being added to the waiting list for heart transplant,” Storozynsky said.

The retired middle school teacher has been hospitalized since June 14 and he remains optimistic about receiving a new heart. He knows it could take several months because New York has one of the lowest donor registry rates in the country. However his hometown is located in Tompkins County, where 40 percent of adults are registered organ donors. That is the highest rate of any county in the state. 

URMC’s Program in Heart Failure and Transplantation is the only comprehensive heart failure and transplant service in upstate New York. It is a national leader in research efforts to further the treatment of heart failure and return patients that suffer from heart failure to healthy and productive lives.

Knewstub’s situation has opened his eyes to the dire need for greater participation in organ donation. In New York, there are 10,000 people waiting for organs, more than 112,000 in the country.

“Mr. Knewstub represents the many patients who are waiting for the gift of life, which can only be provided by donors and their families. We encourage everyone to have a discussion with their families to ensure their wishes are known,” said Rob Kochik, executive director of the Finger Lakes Donor Recovery Network, the organ procurement organization affiliated with URMC and SUNY Upstate Medical University.

FLDRN coordinates organ donation in 20 counties with a population of 2.4 million and serving 38 hospitals in the Finger Lakes region, central and northern New York.

“When people make their own personal decision and inform their family, many people are relieved of the burden of making that decision and donors are ensured their wishes will be carried out,” Kochik said. 

To register as an organ donor, go to