Gov. Matt Bevin today proclaimed May as Brain Tumor Awareness Month and May 17 as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day in Kentucky. He was joined by Dr. Maryam Fouladi of the Cincinnati Children’s Hospital, 17-year-old Kentucky native Kayne Finley, and other special guests during a ceremony in the Capitol Rotunda.
“I appreciate all of those who have gathered here today to focus on a subject that, frankly, we wish we did not have to focus on,” said Gov. Bevin. “Less than four percent of all cancer research is dedicated to pediatric cancer. Children literally and figuratively don’t have the voice that adults do, and we need to be that voice for them.”
There are more than 16,000 deaths from brain tumors annually in the U.S., including 250 each year in the Commonwealth, according to the American Cancer Society and the Kentucky Cancer Registry. Approximately 1,000 Kentuckians were diagnosed with primary brain or other nervous system tumors—with 360 diagnosed with malignant brain tumors—during the most recent year statistics are available (2013).
Fouladi, medical director for the Cincinnati Children’s Hospital Brain Tumor Center, discussed current research and progress toward a cure.
“I’ve been doing this for about 15 to 20 years now,” said Fouladi. “And I don’t think I’ve ever been more hopeful about the future of how we all can work together to cure these diseases that at this point are rarely, if ever, curable.”
DIPG attacks the area of the brain that controls breathing, swallowing, and the movement of head, face, arms and legs. This central nervous center (brainstem) cancer, generally attacks children ages 3-10. It is inoperable because the borders of the tumor are not well defined, and survival is often little more than one year.
Finley, who is originally from Union, Ky., has fought this disease since October 2016. College swim teams across America have staged “Cannonballs for Kayne” fundraising events to help the family offset expenses, as well as to raise awareness for DIPG.
He shared his inspirational story and his passion to advocate on behalf of other brain tumor patients—especially children. “I will continue to try to be that light in the darkness that so many of us fear, as I pursue my own battles,” said Finley.
Also attending the ceremony were the families of three other children—Brooklyn Smith of Erlanger (age 6), Dawson Moore of Taylorsville (age 11), and Phil Parks of Louisville (age 14)—who “gained their wings” after their own battles with brain cancer.
Gov. Bevin presented the Finley, Smith, and Moore families with official copies of the DIPG Awareness Day proclamation; and he presented the family of Parks with an official copy of the Brain Tumor Awareness Month proclamation.