As Chairman and CEO for The Travelers Companies, Jay Fishman, W’74, WG’74, PAR’03, PAR’06, helped countless people find the peace of mind and resources to weather unexpected obstacles. He and his wife, Randy, PAR’03, PAR’06, would understand the importance of doing so even more after Jay’s devastating diagnosis of amyotrophic lateral sclerosis (ALS).
“ALS is difficult, emotionally and physically,” Randy says, “While we had the resources to tend to Jay’s care, many people do not. We felt it was our obligation to find ways to help others facing needs they may not even imagine.”
The Fishmans’ understanding grew after a nationwide search for guidance led them to Penn Medicine’s Dr. John Hansen-Flaschen. With more than 40 years experience as a pulmonologist, Dr. Hansen-Flaschen knew that respiratory care is crucial for patients with ALS as their lungs progressively lose function. He also knew that while ALS funding typically focused on the neurological aspects of the disease, there was enormous potential for improving a patient’s quality of life through managing their ability to eat, speak, and eventually breathe on their own.
“This is one of the most undervalued areas of care in pulmonary medicine,” Dr. Hansen-Flaschen says. “ALS is a horrible neurological impairment, and it is important to understand how and why it happens if we ever hope to cure it. But there is another side of the disease, too, and we must not forget about patients who are suffering right now.”
With Dr. Hansen-Flaschen’s insights, the Fishmans were able to line up the tools, resources, and knowledge to ease the challenges Jay would face as the disease progressed. They realized these options simply didn’t exist for many patients with ALS.
“John Hansen-Flaschen has a gift for connecting with his patients and their families,” says Randy. “It was clear to both Jay and me how important his medical expertise was in helping Jay maintain his optimal respiratory function as the ALS progressed. Every patient deserves a caregiver like that.”
Inspired by their experience and growing knowledge of the needs of other patients with ALS, the Fishmans endowed the Jay and Randy Fishman Program for Home-Assisted Ventilation (HAV) in 2016, with a goal to make essential ventilation equipment and home care more accessible and affordable. The gift also enabled Dr. Hansen-Flaschen to grow a team including former Fishman Program Fellow Dr. Jason Ackrivo, a nurse practitioner, a respiratory therapist, and a social worker, all of whom help attend to the complex, often unmet needs of patients with ALS and other neuromuscular diseases.
“There are only a few places that dedicate this level of attention to pulmonary medicine as an integrated part of ALS management,” says Dr. Ackrivo. “Jay and Randy’s support enabled us to pioneer these strategies, change the course of care for patients, and extend many lives. That is a truly powerful gift.”
Since its establishment, the HAV program has served more than 230 patients, with a current panel of 190 patients, including many young adults who transitioned out of pediatric care.
Jay passed away shortly after the Fishmans established the HAV program, but Randy remains active in the ALS community, keeping track of the latest developments in research and helping make connections between the Fishman Program and other ALS centers that can benefit from these services and counsel on the importance of respiratory needs as part of the care protocol.
A second-generation American and first-generation college student, Jay Fishman was always driven to create opportunities for others. Through the Home Assisted Ventilation program, he and Randy have been able to offer other patients with ALS a more comfortable life, preserving the dignity of their final days.
“Randy is an integral member of our team,” says Dr. Hansen-Flaschen. “We speak regularly, and I always value her insights. The connections and opportunities she creates and her continued engagement makes their philanthropy all the more meaningful.”
“This is Jay’s legacy, and it’s our legacy,” says Randy. “I cannot walk away from that.”
