On October 14, 2022, Ed Lojewski did what he did on any other Friday: He went to Denny’s for breakfast with friends and then bought two lottery tickets at his local convenience store. He returned home, not thinking much of his purchase until the following Sunday when he checked the local paper, as was his custom, and saw the winning numbers—his numbers—printed in black and white. He had won. And won big. As in $247 million big.

Ed sat on this news for a full week without telling another soul. In fact, the story didn’t break publicly until an NBC Bay Area news article was released in January 2023.

A humble man with a humble lifestyle, Ed continued to keep his news quiet, leading the life he always had, remaining in his same small townhouse and continuing to drive his beloved Lincoln Town Car. “That’s just the kind of man he was—always more interested in other people than himself,” says his daughter, Susan Adams.

From patient to philanthropist

For Ed, the windfall presented an opportunity to support what mattered most: his family and the medical research that offered hope to patients like him. In April 2023, six months after his win, he made a decision that would impact countless lives—making a transformative gift to Stanford Medicine to advance research into the rare cancer he’d been living with for four years.

Ed’s gift supports the work of Youn Kim, MD, a physician-scientist at Stanford Medicine who had diagnosed Ed with cutaneous T-cell lymphoma, or CTCL, in 2019. Dr. Kim, the Joanne and Peter Haas, Jr., Professor for Cutaneous Lymphoma Research, director of Stanford’s Multidisciplinary Cutaneous and T-cell Lymphoma Program (MCTLP), and a professor of dermatology, is a world-leading expert in the disease. Dr. Kim and her translational research partner Michael Khodadoust, MD, PhD, have been working tirelessly to develop effective and safe targeted immune therapies in CTCL.

Over the years of his treatment, Ed had come to understand both the devastating impact of CTCL and the promise of the MCTLP team’s groundbreaking research. It was this combination—Dr. Kim’s innovative work and her compassionate care—that inspired him to make the gift. “Out of all the charitable areas he supported with his winnings, Stanford by far was the biggest benefactor of his generosity,” Susan says.

“This is truly philanthropy-enabled science, as the work would not be possible without Ed’s support. His gift will help fund a clinical trial of the vaccine, which is of paramount importance for a proof of concept that will enable further development of a novel therapy. Without him, we wouldn’t be able to launch the trial. It’s as simple as that.

A rare disease with no cure

CTCL is a family of cancers that start in T-cells, which are infection-fighting white blood cells of the immune system that have become cancerous instead of protective, multiplying out of control. Most people with CTCL develop red, scaly patches on the skin that can be intensely itchy and painful. Far beyond a cosmetic issue, CTCL can take an enormous emotional and physical toll on people suffering from it.

“This is how I imagine people feel when they have the disease,” says Natalie Leary, RN, a nurse in Stanford’s Multidisciplinary Cutaneous and T-cell Lymphoma Clinic. “Let’s say you have numerous mosquito bites, and they’re all over your body, and they’re so itchy, and there’s nothing you can do to make that itch go away. It’s all you think about when you wake up, and when you go to bed at night, and when you see them in the mirror. It’s an itch that you feel down to your bones, and it is relentless, and it will not stop. Can you imagine the impact that would have on your psyche?”

Because CTCL is a chronic disease, patients also face the prospect of having to treat it for the rest of their lives—which poses yet another challenge. “Having to take care of their skin every single day, and being reminded every single day that they have a form of cancer—they can’t forget about it. Their body won’t let them forget about it. And they can’t get a break,” Natalie adds. “There is no reliable curative therapy.”

In the majority of cases, CTCL is an indolent disease, meaning that it progresses slowly. Yet approximately one-third of patients have advanced disease, as did Ed, which can cause tumors, skin ulcerations, and the involvement of blood, internal organs, and lymph nodes. In these cases, the disease can prove fatal.

During his treatment, Ed had witnessed the full spectrum of what CTCL patients endure. “He understood what it means to live with this disease day in and day out,” Susan says. “And he knew that Dr. Kim was working on something that could actually change that for people.”

According to the Cutaneous Lymphoma Foundation, approximately 3,000 new cases of CTCL are diagnosed in the United States every year, qualifying it as a rare disease. As such, government and industry funding for research can be difficult to come by, making it paramount that funding come from other—often private—sources, as with the gift from Ed Lojewski.

Federal agencies, such as the National Institutes of Health, often provide less funding for rare diseases because they prioritize research that yields the broadest public health impact. Industry research must often focus on profit and thus is seldom interested in supporting rare cancer research. For patients with CTCL, private philanthropy represents the best, and sometimes only, path toward a cure.

The right gift at the right time

The biggest challenge with treating CTCL is that there is currently no reliable and safe therapy that provides a cure. The only potential curative treatment is an allogenic hematopoietic stem cell transplant, which involves replacing a patient’s immune system with matched donor cells. Given that the disease involves immune cells that have gone rogue, the goal is to have the donor’s immune cells recognize the patient’s cancer cells as foreign or abnormal and attack them.

However, this potentially curative therapy comes with significant risk—it can cause life-threatening complications where the donor cells attack the patient’s healthy cells. Furthermore, the donor immune cells may fail to work effectively to hunt and kill cancer cells.

Drs. Kim, Khodadoust, and team have been developing a newer approach: one that boosts and hones the power and selectivity of the good immune cells, making them energized and sensitized to hunt down and kill cancer cells only.

This approach can be done with donor cells in a transplant setting or as a vaccine administered directly to the patient.

Most notably, Dr. Kim and her colleagues are developing a novel vaccine against the cancer-specific T-cell receptor, which can be personalized to each patient. This vaccine—an immunotherapy platform—represents exactly the kind of innovative research Ed wanted to advance. His gift will fund the critical next step: a clinical trial that could bring the vaccine to patients.

“This is truly philanthropy-enabled science, as the work would not be possible without Ed’s support,” Dr. Kim says. “His gift will help fund a clinical trial of the vaccine, which is of paramount importance for a proof of concept that will enable further development of a novel therapy. Without him, we wouldn’t be able to launch the trial. It’s as simple as that.”

Continuing Ed’s legacy

Sadly, Ed passed in December 2023 at the age of 90, eight short months after making his gift to support Dr. Kim’s work. “While his CTCL was advanced, he died with the disease, not because of the disease,” says Dr. Kim, who notes that a drug she helped develop changed the course of his disease and gave him quality time he might not otherwise have had.

Since that time, Susan has chosen to continue her dad’s legacy by also supporting Dr. Kim’s work. “Dad trusted that Dr. Kim was the right person to find a cure, or to find the least painful path with the most hope for the future,” she says. “The knowledge that he could help save lives, and to be part of her project, inspires me to do the same.”

It’s also the relationships that her dad forged with Dr. Kim and her team that mean so much to Susan. “He absolutely loved Dr. Kim and her team,” she says. “The whole team was very special to him, and now I feel the same way. They’ve brought me in like family.”

For Susan, continuing her father’s support isn’t just about honoring his memory—it’s about sharing his vision. “When you win the lottery, you can do anything,” she reflects. “Dad chose this. Out of everything in the world he could have supported, he chose to help find a cure for a disease that most people have never heard of. That tells you everything you need to know about who he was—and what he believed was possible.”
 

To learn more about Dr. Kim’s work, please visit https://med.stanford.edu/cutaneouslymphoma.html.

If you would like to support Stanford’s Multidisciplinary Cutaneous and T-cell Lymphoma Program, give a gift online or contact Katharyn Israel, senior associate director of major gifts, at katharynisrael@stanford.edu.