On Tuesday night, the University of Georgia held a candlelight vigil to remember staff and students who passed away during the school year.
Liza Burke, 21, is one of the students whose death made national headlines after she succumbed to a rare brain tumor.
MORE: Jacksonville doctor explains rare condition that caused UGA student’s spring break hospitalization
Burke’s death is also putting a spotlight on the fact that May is Brain Tumor Awareness Month and two national non-profit organizations based in Ponte Vedra do a lot to help brain tumor patients and their families.
The founder of the Sontag Foundation and the Brain Tumor Network says it all started after his wife was diagnosed with a brain tumor and told she only had three years to live.
She survived her ordeal and her husband said after experiencing what they went through, he knew he had to help others.
Both the Sontag Foundation and the Brain Tumor Network are probably two non-profit organizations that the average person in Jacksonville may not know about let alone heard of. But both organizations play a key role in funding research on cancerous brain tumors. Rick Sontag founded both organizations.
“We now have in 20 years, given away $60 million for grants. We have 66 grant winners. Every major cancer center in the United States,” Sontag said.
Sontag said when it comes to understanding brain cancer, research is vital.
“The research is the basis for getting new treatments for the disease. You must start in a laboratory to understand how to treat the disease,” he said.
According to the Brain Tumor Network, an estimated one million Americans are living with a brain tumor and close to 95,000 Americans are diagnosed every year. Despite major medical breakthroughs in treatments of other cancers, the survival rate for brain tumor patients has not significantly changed during the past 45 years. Less than 36% of patients with malignant tumors survive beyond five years. People diagnosed with Glioblastoma, a type of brain cancer with no cure, have a life expectancy of up to 18 months depending on their genetics.
“This is the disease not too many know about, but they indirectly heard about it because it killed Beau Biden, Teddy Kennedy, John McCain, and a variety of other important people like Wilma Rudolf, the famous track star,” Sontag said.
It also recently killed Burke, a University of Georgia student who suffered a brain bleed while on spring break in Mexico. She died after aggressive efforts to reduce the tumor at the Mayo Clinic in Jacksonville failed.
The Brain Tumor Network serves patients in all 50 states with a team of nurses, social workers, health information assistants and medical advisors. When it comes to research, they often advise patients to take part in clinical trials.
“I think it’s very important because not only does it maybe give them a slightly better shot, but also it helps the researchers know what is potentially effective for this disease,” Sontag said.
Sontag said without clinical trials, the process of finding newer and better treatment options slows down.
When someone is diagnosed with a brain tumor, the organizations use their network of experts to help a patient get a second opinion.
They also help patients find medical facilities that are fully equipped to handle patients suffering from brain tumors.
Dealing with medical insurance is sometimes a hard process for patients and their families, so the organizations help guide them through that process.
The founder of both organizations says a lot of people don’t a have clue of what to expect when they or a loved one is diagnosed with a brain tumor.
Last year, the Brain Tumor Network served 737 families nationwide, including 43 families of child patients.
They also educated 414 patients on specific treatment options and the network provided social services to more than 300 patients and their caregivers.