“Even though Kendall is now almost 15 years in remission, I still to this day think of myself as a mom whose daughter had cancer,” says Alison Sierens. “It becomes a lifelong part of you.”
When we were first introduced to Sierens, her husband Bob and their four daughters, Ryan, Jaime, Kendall, and Payton, in a 2015 Sheridan Road profile, we learned that Kendall was just 2-years-old when she was diagnosed with Acute Lymphocytic Leukemia (ALL). The rare form of cancer grows when the body begins to overproduce abnormal lymphocytes that crowd out healthy blood cells, causing the body to struggle to fight infections.
Kendall beat the disease, and the Sierens family became staunch supporters of the Leukemia & Lymphoma Society, giving back to an organization that had helped their family—and so many others—in its time of need.
Bob served on the LLS Board for years; Kendall was named LLS Girl of the Year in 2012; Jaime helped her mother co-found the Find A Cure service board for North Shore high school students who want to participate in fundraisers supporting LLS; and Alison joined the Illinois LLS advocacy committee which goes to Springfield and Washington, D.C., lobbying Congress for patient rights and access to treatments.
“With every year that passes, cancer is more and more in our rearview mirror,” says Sierens. “But there is always a voice in the back of my mind reminding me not to forget what we went through. Once you go through the darkness of childhood cancer, your heart and mind unavoidably experience some type of metamorphosis. Luckily, we were able to come out on the other side with gratitude and became much more proactive about philanthropy.”
In 2017, Sierens, Jaime, and Kendall headed to D.C. with a small team of other LLS policy advocates and volunteers to push for increased funding for critical cancer research, specifically pediatric cancer research, and to ask for support of the Cancer Drug Parity Act, which ensures access to cancer treatments for patients regardless of how the treatments are administered.
Because of innovations in medical care, increasingly cancer therapies are administered by patients themselves in pill form, but this type of oral drug often results in higher out-of-pocket costs, and the bill helps prevent health plans from applying unequal cost-sharing criteria. Today, it is still on the table at the federal level.
In 2018, however, Congress allocated $3 billion in new research funding for the National Institute of Health, which will greatly improve cancer patients’ lives, and passed the Childhood Cancer Survivorship, Treatment, and Research (STAR) Act, the most comprehensive childhood cancer legislation ever introduced. The STAR Act expands opportunities for childhood cancer research and increases efforts to identify and track childhood cancers, which will both lead to improving the quality of life of survivors.
“When you have a 13-year-old girl talking about her own experience with cancer, face-to-face with congressmen, it makes a difference,” says Sierens. “I remember telling the girls that these leaders are moms and dads, too, and they care about kids. I was incredibly touched by how kind and engaged the congressmen were with the girls, especially Illinois Congressman Brad Schneider, who has since attended two Find A Cure meetings and is a big supporter of what we do.”
The students who launched Find A Cure are now in college, including Jaime Sierens, a Tulane freshman, as well as North Shore residents Ethan Rosen, Anna Resnick, Carly Lewin, Jade Harris, and Nathan Khomutov. Most stay in touch with Sierens about the service work they continue to do on campus for organizations like Books to Prisoners, Blessings in a Backpack, and mission-driven apparel brand Love Your Melon. Kendall is now on the executive board of Find A Cure.
In 2019, Find A Cure received an award from LLS for being an outstanding third-party fundraiser. While exciting for the 100-plus teens who have been involved with the Board since its inception, the recognition could not top the moment when Chicago Bears linebacker Khalil Mack dropped by their annual fall fundraising car wash, taking pictures with the kids, and making a sizeable donation.
Despite the COVID-19 outbreak throwing a wrench into spring fundraising plans, Sierens operates with a “cancer doesn’t stop so neither can we” philosophy and has shifted Find A Cure’s fundraising to online. She is also one of 5,000 people who wrote letters to Congress explaining the unique needs of cancer patients during the pandemic.
In April, LLS committed $4.5 million for blood cancer patients impacted by COVID-19—with a goal of raising $10 million— through a financial aid program that provides $250 to eligible patients struggling with the economic hardship presented by the pandemic.
“It comes down to gratitude and love for people,” says Sierens. “If you have those two things, then it often leads to action. We received so many phone calls and emails after our first Sheridan Road feature from people who opened their hearts and wanted to be involved. Because there is no cure, we have to keep finding ways to raise money so that no family ever has to get the call we did.”
For more information about Find A Cure, visit events.lls.org/il/findacure2019.