Starting With a Big Boost for Rare Disease Research, This Couple Are Ramping Up Their Giving

A recently announced $17 million gift to the Leukemia & Lymphoma Society will be transformative for the recipient — itself the largest nonprofit regrantor for research into blood cancers. But the gift also signals a new strategic direction for the funder, the somewhat under-the-radar Mike and Sofia Segal Family Foundation.

The Leukemia & Lymphoma Society (LLS) is a global leader in funding research for the various forms of blood cancer. The main types — leukemia, lymphoma and myeloma — are diagnosed in about 185,000 people in the U.S. each year, expected to account for 9.4% of new cancer cases in 2023. And while there are treatments and often cures for some of the more common blood cancers, the Segal family's gift will be devoted to research for one of the rarest and hardest to treat forms of blood cancer, chronic myelomonocytic leukemia (CMML).

Approximately 1,100 people in the U.S. are diagnosed with CMML each year. In addition to the dearth of therapies, the condition usually progresses to severe disease, said E. Anders Kolb, president and CEO of LLS. The good news is that few people get it, but that's also the bad news.

“It's a rare disease among rare diseases,” Kolb said. “And not unexpectedly, there hasn't been a whole lot of money invested in advancing the science.” That made the Segal family gift especially welcome to the CMML community, including scientists.

In fact, said Kolb, funding for the disease had been historically so scarce that LLS, a top funder of blood cancer research, did not even have a research program for the disease. As a result of its experience within the blood cancer research community, however, LLS was able to work unusually fast to assemble a research program to manage the new funds, developing a framework of research questions, announcing RFPs and awarding grants.

“We were able to fund some very competitive, very strong research grants in about nine months,” Kolb said. “Rarely do we get a transformational gift like this that allows us to expand the amount of investment we make in an area of research, but not at the expense of of anything else.”

There are now investigators around the world studying CMML, who wouldn’t have otherwise been doing so, with a goal of developing new therapies, Kolb said. And the LLS will also work to attract additional funding to further enlarge and strengthen the new program.

As is common in philanthropic giving for diseases, the spark for the donation had a personal element — in this case, a Segal family relative who was diagnosed with CMML. But a little background on the Segals themselves may show how the couple's life and work experience led them to take the proactive step of backing the formation of an entirely new funding program within cancer research.

Mike and Sofia Segal were born and raised in Ukraine, then part of the Soviet Union, after World War II. Those were not easy years, Mike told me, but they were also the roots of the Segal couple's philanthropic instinct. “My dad and mom instilled values of self-reliance, but also care for other people,” he said.

Both Mike and Sofia had master’s degrees in electrical engineering and worked in the power industry in Ukraine, but they felt opportunities there were limited and so made plans to emigrate to the U.S. They arrived in 1978 with just $120 — all that the Soviet government would allow them to take. They found work in the U.S. power industry, advanced professionally, and in 1990, founded their own company, LS Power, which grew to become one of the country's largest private owners of power generation, electric transmission, renewable energy infrastructure and transition to renewables.

With the success of their business, during the last 20 years, the Segals started devoting more time and funds to philanthropy, Mike said, particularly for needs they felt were overlooked in society, such as support for seniors. "We both felt that the elderly are one of the most vulnerable demographics," he said.

And drawing upon their extensive professional background and expertise, the Segals have also long supported research to improve the country's energy system transition smoothly and effectively to renewable sources. They've backed, for example, the Center on Global Energy Policy at Columbia University, where Mike is also an advisory board member. “Their focus is to develop sensible policies that will ultimately result in the reduction of carbon and deal with the climate issues and deal with it in a pragmatic way,” Mike said.

Over the years, the Segals also supported organizations that promote democracy and freedom around the world, Jewish causes, museums and the arts, among others. A recent year's form 990 shows a wide variety of philanthropic interests, with donations to the Jewish Soldier Museum, the Washington Institute for Near East Policy, American Friends of the Royal Philharmonic, American Friends of Beit Hatfutshot, Baptist Health Foundation, Iraq and Afghanistan Veterans of America, Digestive Disease Research Foundation, the Center for Peace, and others. Most of the gifts ranged from $25,000 to $250,000 each.

Now that they've handed off day-to-day operations of their company to their sons, the Segals are sharpening the family foundation's strategy. “Recently, we retooled our approach to our philanthropic giving to make it more strategic, to make it more targeted, and to make it more sizable,” Mike said. “The $17 million donation to the Leukemia & Lymphoma Society is just the first in the chain of gifts that we're going to make in the field of diseases.”

(Note: the Mike and Sofia Segal Family Foundation should not be confused with the similarly named Segal Family Foundation, which supports organizations working across sub-Saharan Africa.)

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