UPDATE: The Senate this week approved the resolution unanimously on Monday. Thanks to Sen. Mary Souza (R-Coeur d’Alene) for carrying the bill on the floor.
(Boise) — On Friday, February 16, 2018 Rep. Greg Chaney (R-Caldwell) presented a resolution before the House Health & Welfare Committee to designate May 17th as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day in Idaho. Idaho would be the 21st state to designate May 17 as DIPG Awareness Day.
“The purpose of this resolution is to…let those facing the disease know that…they are not alone…to let them tell their story,” Chaney said.
After Chaney’s presentation, the father of a child fighting DIPG gave emotional testimony about the experience his son and their family have had with the disease. The committee voted unanimously to send the resolution to the full House. Representatives from Camp Rainbow Gold, a camp for terminally ill children, were also on hand to express their support for the resolution.
DIPG is a brain tumor that affects 200-400 children annually in the United States. It is a tumor that appears on a part of the brain called the pons. The text of the resolution (HCR36) is below:
IN THE HOUSE OF REPRESENTATIVES HOUSE CONCURRENT RESOLUTION NO. 36
BY HEALTH AND WELFARE COMMITTEE
A CONCURRENT RESOLUTION STATING FINDINGS OF THE LEGISLATURE AND DESIGNATING MAY 17 AS DIFFUSE INTRINSIC PONTINE GLIOMA AWARENESS DAY IN IDAHO.
Be It Resolved by the Legislature of the State of Idaho:
WHEREAS, according to the Centers for Disease Control, brain tumors now rival leukemia as the leading cause of cancer-related death in children; and
WHEREAS, diffuse intrinsic pontine glioma (DIPG) is the second most common malignant brain tumor in children; and
WHEREAS, DIPG affects 200 to 400 children in the United States each year, many between the ages of five and nine; and
WHEREAS, DIPG is a brain tumor found at the base of the brain; they arise from the brain’s glial tissue, which consists of cells that support and protect the brain’s neurons; and
WHEREAS, these tumors are found in an area of the brainstem called the pons, which controls many of the body’s most vital functions, such as breathing, blood pressure and heart rate; and
WHEREAS, children with DIPG often exhibit signs of facial weakness, abnormal eye movement, loss of muscle control, difficulty walking, imbalanced limb movement, trouble chewing or swallowing, hearing issues, insomnia, loss of bladder or bowel control, trouble breathing, nausea and headaches; and
WHEREAS, while these children lose control of most of their bodily functions, they still retain the ability to comprehend their situation; and
WHEREAS, DIPG symptoms appear suddenly and are often misdiagnosed, but these tumors are highly aggressive and grow rapidly; and
WHEREAS, the causes of DIPG are unknown; and
WHEREAS, there is no known cure for DIPG; and
WHEREAS, most children diagnosed with DIPG survive for only nine months after diagnosis; and
WHEREAS, DIPG has a zero percent survival rate; ultimately, children with DIPG fail to breathe or their hearts stop beating; and
WHEREAS, DIPG is a devastating childhood cancer that has tragic consequences for the young lives it seizes; and
WHEREAS, increased awareness will encourage crucial research on discovering a treatment for children with DIPG.
NOW, THEREFORE, BE IT RESOLVED by the members of the Second Regular Session of the Sixty-fourth Idaho Legislature, the House of Representatives and the Senate concurring therein, that May 17 of each year be designated as Diffuse Intrinsic Pontine Glioma Awareness Day in Idaho.
BE IT FURTHER RESOLVED that the Legislature recognizes those whose lives have been touched by DIPG and encourages all Idahoans to become more informed about DIPG and pediatric brain cancer, so that more may be done to care for these children and to find a cure.