A Shelton resident whose career path was forged in nearby schools is now leading the operations of a $300-million cancer patient advocacy agency.
Last fall, Louis J. DeGennaro was named president and chief executive officer of The Leukemia & Lymphoma Society (LLS), based in White Plains, N.Y.
“The vision I’m bringing is a world without blood cancer,” DeGennaro said, and LLS has invested more than $1 billion in blood cancer research.
“That $1 billion continues to yield more breakthroughs,” said DeGennaro, who holds a doctoral degree.
“The bow of the ship is research and funding,” he said. “Research funding has touched the discovery of nearly every therapy made to treat the blood cancers.”
The LLS is a 65-year-old organization founded by a husband and wife who lost their teenage son to leukemia, DeGennaro explained. They didn’t want another family to go through the trauma they had endured, he said, and LLS has been true to their wishes.
Early interest in science
DeGennaro is the grandson of Italian immigrants who started a farm in Woodbridge. He graduated from Amity High School, where he met his wife, Shirley Fellows, who grew up in Orange.
“I guess you could say we were high school sweethearts,” he said.
His Amity High experience was also a stepping-stone to his life’s work. “I wanted to become a scientist from the moment I heard a lecture by my biology teacher, John Janenda,” he said.
The lecture topic focused on chemical pathways and specifically the Krebs cycle, the central metabolic pathway of aerobic organisms. “I found the subject fascinating,” DeGennaro said.
UConn, UC-San Francisco and Yale
He went on to graduate from the University of Connecticut, marry Fellows, and move to California to earn a doctorate in biochemistry from the University of California at San Francisco.
The DeGennaros returned to Connecticut so he could conduct post-doctoral research at the Yale University School of Medicine.
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‘My scientific profession took us around the world.’
— Louis J. DeGennaro
Since then, he has amassed more than 25 years of research, drug development and executive management experience in academic and private sector settings. He’s worked in Germany, Canada, Nebraska, and Massachusetts.
“My scientific profession took us around the world,” he said. “When I took the job at LLS, it was an opportunity to move back home. We decided it would be a wonderful opportunity to move back to our families.”
Moving to Shelton
DeGennaro and his family moved to Shelton in 2007. “Shelton had the kind of home we were looking for and was centrally located,” he said, allowing him to commute to White Plains via the Merritt Parkway or I-95.
“The location is wonderful for us,” he said, and his brother and sister also live in Shelton.
“We like the mixture of professional people and the rural character,” DeGennaro said. “You don’t have to go too far to come to farmland and apple orchards.”
In his rare leisure time, he flies model airplanes as a member of the White Hills Eagles Radio Control Club, a group that flies radio-controlled aircraft from a farm in the White Hills section of town.
DeGennaro is recognized as the key architect of LLS’s cures and access agenda to help save the lives of blood cancer patients, and also the LLS Therapy Acceleration Program, in which the agency works with the biotechnology industry to support drug discovery and development.
His appointment as CEO “is in recognition of his vision, leadership and commitment to the LLS mission,” said James H. Davis, LLS board chairman.
“I bring an in-depth understanding of what it takes to develop research and new drugs,” DeGennaro said. “It’s a rare skill set. The challenge is that we don’t know what causes these diseases, so it’s difficult to talk about prevention. There’s no early detection.”
Despite the challenges, advances in drug therapy and treatment for blood cancer patients have been dramatic in recent years,
Much improved survival rates
In the 1960s, the most common leukemia had a 3% survival rate, DeGennaro said. Today, there’s a 90% survival rate.
There is an 85% cure rate for Hodgkin’s disease, and survival rates for other blood cancer patients have doubled, tripled and quadrupled, he said.
“In 1999, if you had chronic myeloid leukemia (CML), you had a life expectancy of three years,” he said. But by 2001, through LLS research and funding, a new drug, imatinib (Gleevec) was developed that controls the disease so patients live for decades.
“A person diagnosed today with CML will live a long, productive life,” DeGennaro said. “The introduction of that drug changed the way we treat cancer.”
Rather than subjecting a patient to a bombardment of chemotherapy that kills both cancer and “good” cells, the new drug aims to “go after the cancer and leave the good cells alone,” he said.
Benefits other cancer treatments
LLS research grants funded the development of an immunotherapy that makes use of a patient’s immune system to attack blood cancer. The treatment is being tested in breast, colon, pancreatic, and ovarian cancer.
“Research in blood cancer leads to important treatments in other cancers,” he said
LLS is providing $1.6 million in grant funding to several Connecticut scientists at Yale and the University of Connecticut Health Center in Farmington, according to the agency.
Patients and advocacy
“We’re supporting research, but patients need to have access,” DeGennaro said. “We want to make sure patients know about their diseases and go for the best treatment.”
LLS offers one-on-one support from information specialists (800-955-4572), online chat groups, and discussion boards. It provides some co-pay assistance, patient education programs, videos, and free educational materials.
“Our patient support and advocacy programs help ensure that patients have affordable access to the latest therapies,” Davis said. “Under Dr. DeGennaro’s leadership, LLS will continue to advance our mission and help save the lives of blood cancer patients — not someday, but today.”
The agency’s mission also includes policy and advocacy. “We’re the voice of cancer patients in Washington, D.C., and in state legislatures,” DeGennaro said. “We advocate for legislation in the best interest of cancer patients.”
Rely on the public for support
He emphasized the importance of people donating to organizations like LLS. “All the dollars we use are from contributions from individuals,” DeGennaro said.
“We don’t receive money from the federal government,” he said. “We rely on the public to support these efforts.”
To donate, visit www.lls.org or call the local chapter at 914-949-0084.