A Family Affair

Son’s cancer leads Diana and Lou Ulman ’67 to offer support to other young adults.

by Michelle Simmons

April 1, 2009

Diana (left) and Lou Ulman '67 with Kelly Kaufman Lance '83, P '11, spread the word about cancer in young adults.

When Sam Donaldson aired a Primetime Live special in October 1997 on his bout with cancer, Lou ’67 and Diana Ulman watched, mesmerized. Their son Doug, a sophomore at Brown University who recently had been diagnosed with bone cancer, sat in his dorm room equally transfixed by the show.

“We were on the phone for the entire hour, watching it together,” recalls Diana. “It was so raw to us, and we talked through the whole thing.”

Donaldson ended the show with a call to action. The next morning, the family decided to launch its own nonprofit. “I don’t think I had any idea how many other families were dealing with challenges similar to those that my son faced,” Lou remembers. “It was so frustrating. We couldn’t find the right resources for Doug.”

A senior principal at the Baltimore-area law firm of Offit Kurman, Lou created the infrastructure for the organization and provided legal counsel, while mother and son focused their energies on education, programming and outreach.

The Ulman Cancer Fund for Young Adults now is a national clearinghouse for support networks, patient-navigation services and prevention curricula and offers direct services and college scholarships to young people affected by cancer.

During the fund’s creation, “I remember calling organizations and asking about services,” Doug says. “Some of them actually said, ‘No, not that many people in that age group get cancer.’ ”

However, in the United States alone, 70,000 people ages 15 to 39 are diagnosed annually with cancer, and mortality rates continue to rise. Doug himself has twice battled melanoma, making him a three-time survivor.

Not only do young adults face different forms of cancer than their elders—for example, young women with breast cancer tend to get a more aggressive version—but their stage-of-life issues are significantly different. Many are starting their first jobs and have little to no health-insurance coverage, making them less likely to get regular checkups—key to early detection. Relationships for young adults with cancer can be tricky to navigate; there are questions about body image, sexuality and fertility.

The Ulmans’ initial priority was to disseminate accurate information. Doug and Diana wrote a small brochure in 1997, No Way, It Can’t Be!, and published it on their newly launched Web site. Since then, they have updated and expanded it several times, transforming it into a comprehensive guide covering education, self-advocacy, relationships, coping skills and resource organizations.

The follow-up book, My Way, features essays, poems and stories by young-adult survivors who have connected with the Ulman Cancer Fund through scholarships, support groups or volunteering. One of the entries, “Only Skin Cancer,” is by Virginia Lance, daughter of Fritz ’83 and Kelly Kaufman Lance ’83 and sister of Kirsten ’11. A senior at the University of Pennsylvania, Virginia was diagnosed with melanoma in 2005.

“It was a major shock when she was diagnosed,” Kelly says. “She’s had three surgeries since. Like Doug, she has scars everywhere.”

Kelly remembers getting an e-mail from Diana when she first sought help from the Ulman Cancer Fund. Doug and Virginia also began exchanging

e-mails. Before long, Kelly was volunteering and soon became volunteer coordinator. Two years ago, she became full-time grassroots events coordinator and assistant to the executive director.

“I have an awesome group of volunteers, most of whom are parents like myself or young-adult survivors,” Lance says. “They are so enthusiastic and want to give back. This is one great venue to take their situation and make something positive out of it.”

In fact, nearly everyone on the staff has had direct experience with cancer. The executive director, Brock Yetso, lost his mother to cancer and is a childhood friend of Doug’s. One staff member had cancer as a child, while another is undergoing treatment. Yet another staffer’s sister was diagnosed in 2004.

Doug recognizes a certain synchronicity: The Ulman Cancer Fund began the same year Lance Armstrong started his foundation. During his junior year, Doug received an e-mail from Armstrong, who had read an article about him in the Brown University alumni magazine.

“He said, ‘If there’s anything we can do to work together, let me know,’ ” Doug recalls. They corresponded for two years, then started meeting to brainstorm ideas.

In 2002, Doug joined the Lance Armstrong Foundation and became president in 2007. The two cancer survivors have been close friends ever since. One of the recent projects Doug is most proud of is the Livestrong Young Adult Alliance, which he and Armstrong built together.

“A lot of people were doing great work, but there was no umbrella coordinator,” Doug says. “We didn’t want people to reinvent what others were doing, so we worked with the National Cancer Institute to develop this alliance.” The Ulman Cancer Fund was one of the founding members of the alliance, which today includes more than 100 member organizations.

“It’s been quite dramatic,” he adds. “Now when I look around there are literally tens, if not hundreds, of organizations that have sprung up to fill different areas of the cancer continuum for that population. From a timing perspective, we had an idea [born of] a personal experience, and it’s been confirmed time and again that there was a significant need.”

To learn more about The Ulman Cancer Fund, visit www.ulmancancerfund.org.