Glioblastoma Awareness Day brings push for funds, legislation
Advocates plan activities to raise awareness, funds for deadly disease
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July 15 marks the eighth annual Glioblastoma Awareness Day in the U.S., and advocates are calling for continued efforts to advance research and improve life for patients with the disease, one of the most aggressive and deadly forms of glioma.
The U.S. has marked the day on the third Wednesday in July since 2019, following a Senate resolution in response to the death of Sen. John McCain, who died from glioblastoma the year before. Last month, the Senate unanimously passed a bipartisan resolution designating July 15 as this year’s awareness day.
The National Brain Tumor Society (NBTS), which has helped cement the annual awareness day through meetings between advocates and legislators, cheered the bipartisan action to raise glioblastoma awareness.
“As the largest patient advocacy non-profit in the United States dedicated to the brain tumor community, NBTS is deeply grateful to the bipartisan group of Senators and Representatives who continue to lead the charge on behalf of the brain tumor community,” David F. Arons, president and CEO of the NBTS, said in a press release from the society. “And these congressional sponsorships are a direct result of the incredible dedication of more than 350 advocates who met with their lawmakers to ask for their support during our annual Head to the Hill fly-in this past May.”
Partnership with Congress ‘critical’
“This partnership between the people and their members of congress is critical as we continue to advocate for change for this community,” Arons said.
Glioblastoma is one of the most common forms of brain cancer and among the most deadly. According to the NBTS, more than 14,000 people in the U.S. are diagnosed with glioblastoma each year, and about 10,000 people annually die from this cancer. A handful of treatments are available, but outcomes remain poor: Median survival time is just eight months, and only 7% of people with glioblastoma will survive more than five years after their diagnosis.
That’s why the NBTS is pushing for more awareness and research efforts to combat the disease. The society is raising funds to help spur research. matching all donations up to $35,000 dollar for dollar until the end of this week.
“Thanks to rapidly evolving science, emerging technologies, a dedicated research community, inspired philanthropy and investors, critical government funding, spirited advocacy and the generosity of patients and their caregivers who participate in clinical trials, there is more hope than ever before for better treatments and a cure,” Arons said.
To “keep the momentum going,” Arons said, the organization is pushing for legislation to help patients.
“We champion the Bolstering Research And Innovation Now (BRAIN) Act (H.R.2767/S.1330), a landmark, bipartisan piece of legislation developed specifically to address the unique needs of Americans living with brain tumors like glioblastoma, as well as the researchers and clinicians advancing their care,” Arons said. “The BRAIN Act takes a comprehensive approach to improving outcomes, from basic scientific research and early-phase drug development to clinical trials, diagnostic innovation, treatment planning, and quality-of-life support.”
For Awareness Day, the NBTS is calling on people affected by glioblastoma to share their stories in writing, via video, or on social media using the hashtags #GBMDay, #Glioblastoma, and #GBM. The society’s website offers a range of advocacy resources, including shareable graphics and sample posts.
The Glioblastoma Research Organization, another advocacy group, is also fundraising in support of this year’s awareness day.
And the nonprofit Glioblastoma Foundation is hosting its Personalized Drug Development for Glioblastoma Symposium today in Durham, North Carolina. The event, which runs from 10 a.m. to 3 p.m., marks Glioblastoma Awareness Day and the foundation’s 10th anniversary.
The symposium brings together clinicians, researchers, patients, caregivers, and advocates to explore the future of personalized medicine for glioblastoma, with presentations on precision diagnosis, genomic testing, biomarker discovery, clinical trials, and emerging therapies.
The foundation is expanding its efforts to accelerate personalized treatment for glioblastoma, launching a Clinical Laboratory Improvement Amendments (CLIA)-certified genomic testing laboratory, advancing its investigational drug pipeline, and introducing new initiatives to improve patients’ access to precision medicine.
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