Since its founding in 1995, the Lymphoma Research Foundation has awarded more than $63 million in lymphoma-specific research. It is the nation’s largest nonprofit devoted exclusively to funding lymphoma research and serving the lymphoma community, which includes more than 1.5 million people in all 50 states and 40 countries.
The foundation pulls in steady support through a mix of avenues, including ticketed events and Team LRF, a community fundraising program. And while a handful of LRF’s donors hit the six-figure range in support, the foundation has attracted a large swath of other donors who contribute more modestly. This speaks to the tight community that LRF has cultivated, a mix of lymphoma survivors, as well as their caregivers, friends, family members and other supporters who raise awareness and funds.
Consider LRF Board Chair Steven Eichberg, who worked in the hotel industry for close to two decades before later pivoting to the nonprofit space, where he served as executive director of the Academy of General Dentistry. Back in the summer of 2012, Eichberg was diagnosed with follicular B cell lymphoma, a slow-moving type of lymphoma that has no cure as yet. Since then, he’s been increasingly involved as a donor and volunteer, and Eichberg’s story demonstrates how a focused mission, along with personal experience and relationships, drive donor engagement at LRF.
“My Lymphoma Story”
Lymphoma is a cancer that affects lymphocytes, a type of white blood cell. Like normal lymphocytes, cancerous lymphocytes can spread through the blood and lymphatic system and grow in many parts of the body, including the lymph nodes, spleen, bone marrow and other organs. Three major categories of cancers that affect lymphocytes are chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL); Hodgkin lymphoma (HL); and non-Hodgkin lymphoma (NHL), of which there are more than 90 types. Approximately 80,000 people are diagnosed with NHL each year in the United States.
To carry out its work, LRF taps a scientific advisory board of 45 expert lymphoma clinicians and researchers, which guides the planning of the foundation’s research program and selects and monitors grant recipients. Advisors are associated with institutions like Memorial Sloan Kettering Cancer Center, Columbia’s H. Irving Comprehensive Cancer Center, and Stanford University School of Medicine.
When Eichberg was diagnosed with lymphoma, he was able to call on top doctors, including John Leonard at Weill Cornell and Carol Portlock, both of whom have served on LRF’s scientific advisory board. “After all testing and biopsies, I was in a watch-and-wait, or rather, a watch-and-worry period,” Eichberg told me, as he took me through his battles with the illness. By 2016, his lymphoma spread into his bone marrow, prompting a year of radiation treatment and therapy using an old-line drug called Rituxan. The drug seemed to work for a time, until doctors discovered a large lymph node on his psoas muscle, vital for walking. Eichberg went back into radiation.
These days, Eichberg is happy to report that he’s all clear, and is able to dedicate his time to LRF, whose board he joined not even a year ago in November 2019. He first connected with the organization when he was originally diagnosed and was doing a deep research dive to understand the disease and the road ahead. He reached out to LRF’s Helpline, which provides individualized information on types of lymphomas, diagnostic tests, treatment options, potential side effects, and the latest in research to more than 10,000 patients and caregivers each year.
LRF not only provides patients with information about investigative treatments for lymphoma being evaluated at cancer centers nationwide, but also, via its Patient Aid Program and Patient Aid Grants, assists with expenses related to treatment.
“This is the only organization focused specifically on lymphoma, which was a big thing for me. At that time, I didn’t know how many different kinds of lymphoma there were. Finding out that information, I started to donate to the organization, especially in the patient services, support, advocacy front,” Eichberg said of his initial involvement.
Following a common path in which donors steadily escalate their philanthropy and engagement with a cause, Eichberg continued to deepen his relationship with LRF and became part of its Lymphoma Support Network, a one-to-one peer support program for people with lymphoma and their caregivers. Through the network, he says he currently speaks on a regular basis to four people who are going through some of the same initial battles he knows firsthand.
These personal relationships are what Eichberg especially values about LRF. “We talk about fears, what they’re doing in their lives, and it gives people something to hold on to. Even if it’s somebody who you don’t really know,” Eichberg says. “The organization has given me a tremendous amount of support, and this is my giveback to the organization and our constituency. All members of our executive committee are retired, so we have time. It wasn’t even a question.”
Becoming Chair and Reaching Milestones
Looking at the organization’s board and peer donors, Eichberg sees many other people personally impacted by lymphoma, if not as patients, then as family members, caregivers and more. He’s also careful to note that there is a wide range of donors that contribute to LRF, with only six donors listed as contributing more than $100,000, according to a recent annual report.
“Small donor, large donor, it makes no difference,” Eichberg emphasizes.
He and his wife first started out supporting researchers through the Lymphoma Clinical Research Mentoring Program, which supports fellows and junior faculty focusing on clinical research in the field. “These are early career scientists that are critical in finding the cure,” he says.
While LRF wasn’t initially focused on finding a cure for lymphoma, as it passes its 25-year milestone, the foundation is now on that road. It even has a new tagline: “Finding Cures Starts Here.” Since it was founded, chronic lymphocytic leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma mortality rates have decreased by 55%, 50% and 39%, respectively. And more than 30 drugs to treat lymphoma have been approved by the U.S. Food and Drug Administration.
Eichberg believes LRF’s community remains so robust because of the disease specificity. “We really are their advocates. I’ve given you some examples personally. And I think everyone in this community believes in paying it forward… And from a supporter standpoint, it’s not all about big donors. It’s about a broad community of small donors that have been helped. Paying it forward is a huge item. A huge item. It’s why I got involved,” he says.
Eichberg also mentioned his own focus on tackling systemic barriers for women and people of color getting into lymphoma research. “That will end up being another initiative for us, one that I’m planning on driving… It should end up being a nice program for us, and helps our researchers, as well,” he says.
After 25 years, LRF remains hyper-focused in its two areas of work—patient care and research. “We empower our patients and caregivers, and we help identify gaps for lymphoma,” Eichberg says. “This has been our core for the past 25 years. I’m continuously hopeful and energized here. Finding a cure starts here.”