The Leukemia & Lymphoma Society has a mission statement that does not mince words: Cure leukemia, lymphoma, Hodgkin’s disease, and myeloma, and improve the quality of life of patients and their families. The declaration would have sounded outlandish in the society’s formative years under the title Villiers Foundation, named in honor of 16-year-old Robbie Roester deVilliers, who succumbed to leukemia in 1944. Its 1955 annual report stated, “As of this date, leukemia is 100 percent fatal.” Renamed in 1949, today’s Leukemia & Lymphoma Society is a multifaceted organization with a clear goal.
Cutting-edge research is required to unlock the mysteries of blood cancers. Though the crosshairs of this exploration are aimed at blood cancers, the more than $1.3 billion investment has resulted in breakthroughs in treatment and therapies for many other types of diseases as well, primarily through immunotherapy and genomics.
Such inquiry culminates, sooner or later — and with cancer, sooner is the desperate hope — in new United States Federal Drug Administration approved regimens. LLS plays an active role in encouraging policymakers to push ahead to get the answers out of the labs and into the hands of patients. In fact, 85 percent of the blood cancer treatment options approved by the U.S. Food and Drug Administration since 2017 are the result of these efforts. And when someone hears those words, “You have cancer,” the other portion of The Leukemia & Lymphoma Society’s mission statement becomes evident. LLS offers free information specialists, peer group support, and financial assistance, including aid for travel and help with co-pays and insurance premiums.
As campaign development manager for Light the Night, Allison Robinson works year-round to make one night each year radiate with hope across the Midlands. Light the Night is an evening consisting of a ceremony and leisurely walk, in which people come together in memory and honor of those with a cancer story.
“I work with individuals, companies, and families who want to get involved or increase their involvement. I’ve worked for numerous fundraising events, and this is the most inspiring. We have an amazing base of supporters that pre-pandemic raised more than $400,000 annually from the Midlands alone, all of which goes to research and patient support.”
The three Light the Night events in South Carolina take place in Greenville, Charleston, and Columbia. Columbia’s occasion is scheduled for Nov. 4, and will take place virtually this year. Allison says, “This event takes place in over 140 cities across America and also in some other countries, and Columbia’s is one of the pilot events, having been running for more than 20 years.”
Participants will gather together via Zoom to honor blood cancer survivors and patients, remember those that they have lost, and celebrate the impact they have made as a community in the fight against cancer. Individuals may sign up even up to the day of the event, and donations are gratefully accepted until the end of the year.
Cory Manning, a partner at Nelson Mullins Riley & Scarborough, is this year’s presenting sponsor for Light the Night. His father, Mike Manning, was diagnosed and given a less than 20 percent chance to live five years. Thanks to a successful bone marrow transplant he lived much longer than that. Cory says, “The Leukemia and Lymphoma Society was a godsend to my family, providing us with one place to get information and to put us in contact with people in our area who also had this diagnosis. The treatments gave Dad nearly seven more years, and they were good years.”
At the time, Cory didn’t realize how many people are impacted by this disease. “The number of people affected with this is one degree of separation at the most. This was my family’s first experience with a long-term illness such as blood cancer. If a person doesn’t have an immediate family member dealing with this, they should consider themselves blessed.”
Midlands Man & Woman of the Year and Student of the Year
Campaign Development Manager for the Georgia/South Carolina region Amanda DuPre has been with the LLS organization for five years. She heads up the fundraising component known as Midlands Man & Woman of the Year and a similar campaign called Student of the Year. Man & Woman of the Year is a 10-week competition between community leaders.
Candidates are nominated by committee and encouraged to participate. The challenge is to raise the most money for LLS in the time allowed, resulting in the honorary title Man or Woman of the Year and Student of the Year. The top man and woman candidates in each region are pitted against other regions, and each year two fundraising giants are awarded the national title. Amanda says, “A twist in the competition makes it exciting. Candidates can begin to talk about the competition before the start date, but they can only accept funds during the 10-week span, and they are not allowed to disclose how much money they have raised at any point during the competition.” The 2022 competition starts on Feb. 22.
The 2021 Midlands Woman of the Year, Jenifer Maldonado Miller, had been approached several times by LLS to participate in the Midlands Woman of the Year contest. Jenifer was eager to put her marketing expertise and enthusiasm to work, but she waited until the time was right for her schedule so she could reach a specific goal. That time was 2021.
Jenifer says, “Pediatric cancer has been treated exactly like adult cancer, but actually the cancers are different. The number one childhood cancer, leukemia, responds to treatments uniquely, and these patients require a new, targeted therapy to prevent relapse.”
In 2016, another branch of The Leukemia & Lymphoma Society, LLS PedAL, swung into action. “I understood that if my incredible team raised $50,000, a child would receive a matching grant and receive personalized treatment to beat his or her cancer,” she says. Despite COVID restrictions, Jenifer and her team worked tirelessly and surpassed that goal by several thousand dollars. Though Jenifer doesn’t have a personal cancer story, she continues to volunteer for LLS in a leadership position seeking the next Man & Woman of the Year candidates. “LLS is an incredible, collaborative organization that gets things done.”
Brandon Jeffcoat, the 2021 Midlands Man of the Year, first heard about LLS through a business friend, but the dreaded disease touched him personally when his grandfather died from a type of lymphoma three years ago. “He was a huge inspiration in my life. I was the first grandchild and his first boy in a sense because he had all girls — my mom had three sisters. He taught me the joy of spending time in the outdoors hunting, fishing, and playing golf. Losing my grandfather to lymphoma motivated me to do it in his honor.”
Though he did not have a background in fundraising beyond basic involvement in various charities in the community, Brandon’s final tally for the 10-week competition was $105,048 — more than double the next closest male competitor. “I had been on a few golf tournament committees, so I knew I would be doing one of those. I also threw an oyster roast concert where four bands donated their time to come play, and they brought a sizable following. Those two events alone raised more than $62,000.”
Ultimately, Brandon understands the tremendous importance of giving back to the community and advocating for the various organizations impacting people for the better. “Every charity or organization that makes a difference in our community is important to the Midlands to bring awareness to the specific need they are addressing.”
Several years ago, Blake Wood of Columbia helped a friend who was competing for the Midlands Man of the Year goal and honor. As a medical sales manager, Blake did not have much fundraising expertise, but he did understand how difficult it is to get new treatments into the population and appreciated LLS’s role in that process. Blake says, “I’ve always been a little leery of how much money actually goes to a charity’s cause. As I learned more and more about LLS and all their research, I told Amanda I was going to compete the next year.”
A factor that compelled Blake to work hard enough to raise more than $150,000 in 10 weeks to become the 2020 Midlands Man of the Year was personal. Just after celebrating their fifth wedding anniversary, his wife, Crystal, who had never missed a day of school and never even been injured during her high school and collegiate soccer career, heard the dreaded words. She had leukemia.
Crystal received chemotherapy and her health looked good, but the cancer came back. Over the next few years she endured a bone marrow transplant and later a stem cell transplant. Four days after her stem cell procedure, Crystal contracted COVID-19 in the hospital. But today, Blake says, “Crystal is looking like herself again, my wife and not just a patient.”
Their son was an infant when she was first diagnosed, and now he is 4 years old. He is another reason Blake persevered to raise money. The LLS Children’s Initiative is making huge strides in research, breaking policy barriers, and expanding support for families facing pediatric cancers. Blake says, “It would crush me if our son had to go through what Crystal went through.”
In addition to caring for Crystal during his 2020 Midlands Man of the Year endeavor, Blake faced a huge challenge in raising the money due to COVID. Events planned at The River Road & Jasmine Houses and Gardens in Chapin, as well as others in Charleston and Atlanta, had to be canceled. But as Crystal says, “Blake is either lazy or crazy.”
When the shutdowns began in March 2020, Blake initially asked his team to hold off requesting donations since businesses were now going to be challenged economically. “But then I decided that cancer doesn’t take a break, so we were going to keep asking.” Blake was correct about the unremitting need, as the LLS 2020 Impact Report outlines new Urgent Need programs, as a result of COVID, in pediatric, adolescent, young adult, and adult programs.
A Board Member Reflects
After serving the maximum eight years on the LLS board, Columbia native Bev Tuller was presented with the Impact Award for Volunteer Leader for the S.C. Board of Trustees for 2021. Before she rotated off, Bev nominated John Buxton, a resident of Charleston. John has been involved in many facets of LLS. On Aug. 4, 2016, John called Bev and her mother, Ginny Tuller, to tell them he had been diagnosed with non-Hodgkin’s lymphoma. This happened five years to the day from DuBose Tuller’s death from chronic lymphocytic leukemia. DuBose was John’s dear friend, Beverley’s brother, and Ginny’s son. Today, John is receiving good reports from his oncologist, and he is five years out from the diagnosis. A wooden cross that Ginny gave him is still in his gym bag.
John says, “I’m a big believer in patient-centric nonprofits like LLS, and the research is also a big part of it. LLS’s focus on blood research pivots to other types of cancer research.” John has been a Man of the Year participant, and he is on the leadership committee for the Man & Woman of the Year event in Charleston. John has also participated in the Light the Night events, some years carrying the gold lantern in honor of DuBose, several years the survivor’s white lantern, and this year he will raise a red lantern in support of his daughter’s friend who has leukemia.
Bev Tuller is asked whether she believes the mission statement of LLS could come true. Could there be a cure for blood cancer? She thinks back to how her heart sank after an announcement in a board meeting. The cure for CLL was five years out. Her brother wouldn’t live long enough to receive it. “Yes, I do. Today people are living who wouldn’t have lived a few years ago. Keep going.”