Awareness

Nebraska Coalition to end Childhood Cancer exists to raise awareness about Childhood Cancer. Annually, 70-90 children are diagnosed with cancer at Children’s Hospital and Medical Center and Nebraska Medicine combined.  Pediatric cancer kills more children in Nebraska than any other disease.  It ranks second only to accidents as the leading cause of death for children in Nebraska. Nationally, Nebraska has the 7th highest incidence rate per capita and the highest in the Midwest region. This is a major health issue in Nebraska and shockingly few are aware of its magnitude.  Through the help of the Nebraska Unicameral and some motivated volunteers in partnership with passionate medical professionals, we have begun to move the  needle in favor of Nebraska’s children.

NEBRASKA CRISIS

Pediatric Cancer Diagnoses in Nebraska
(Ages <20, All Sites), 1990-2013

Pediatric Brain Cancer Diagnoses in Nebraska
(Ages <20), 1990-2013

Number of New Diagnoses Each Year In Nebraska

70-90

Top Three Most Prevalent Pediatric Cancer Diagnosis In Nebraska

Brain/CNS

Leukemia

Lymphoma

29%

of families living in rural areas reported moving residences as their child was diagnosed with cancer.

The average cost for rural families to visit a cancer treatment center is $138 per visit

(moving closer to the treatment center)

Number of New Diagnosis Each Year In Nebraska

70-80

Top Three Most Prevalent Pediatric Cancer Diagnosis In Nebraska

Brain/CNS

Leukemia

Lymphoma

29%

of rural patients in Nebraska reported moving residences as their child was diagnosed with cancer

The average cost for rural families to visit a cancer treatment center is $138 per visit

(moving closer to the treatment center)

WHAT RESEARCH IS BEING DONE IN OUR STATE?

Is there research being completed in Nebraska?

The Nebraska Children’s Hospital & Medical Center and UNMC are collaborating to fight childhood cancer in Nebraska.  The research arm is led by Dr. Don Coulter, M.D.

Annual Budget to Fight Childhood Cancer:  $4,027,102

  • Budget Includes: Research Studies-Recruitment of Researchers-Travel

2018 Nebraska Senate Report

Pediatric Cancer Research Group Supported by the Nebraska Legislature (LB 417) in collaboration with The Fred and Pamela Buffet Cancer Center & Children’s Hospital and Medical Center

MOU for rural health data analysis $27,391
RNAi Therapy of Neuroblastoma $50,000
Tumor Suppressor Genes in Medulloblastoma $144,000
SOX2 and Medulloblastoma $50,000
Novel Mechanisms of Ewing Sarcoma $200,000
GDC-0449 Analogs in Medulloblastoma $50,000
PL-71 in Neuroblastoma $62,330
Development of CCL21 $100,000
Cationic peptides in Neuroblastoma $62,330
Regulation of Ewing’s Sarcoma $50,000
NET-targeted RNAi Therapy $50,000
Sox 2 in Medulloblastoma $100,000
Inhibition of pulmonary metastasis $60,392
Role of ubiquitin in AML $50,000
RUNX1 targeting in AML $50,000
CAR-T with CCL – 21 in solid tumors $250,000
BCHE deletion in Neuroblastoma $49,590
Targeting exosomic microRNAs $100,000

Current Funded Studies Subtotal

$1,506,033

Future Studies

PDX Program $200,000
Medulloblastoma Program Grant $375,000
TBD $500,000

Future Studies Subtotal

$1,075,000

Why does Nebraska have such high rates of Childhood Cancer? 

Currently there are two active projects being researched as to why Childhood Cancer continues to occur at a high rate in Nebraska.

Statewide Budget for learning why:  $150,000.00 (8% of total Childhood Cancer Budget)

Epidemiology of Pediatric Cancer in Nebraska

  1. This collaborative effort between the University of Nebraska Medical Center, The University of Nebraska College of Public Health, The Nebraska Department of Health and Human Services, Children’s Hospital and Medical Center and the University of Nebraska Omaha seeks to understand why the State of Nebraska has the third highest incidence of pediatric cancer in the United States. By evaluating 23 years of cancer registry data provided by the DHHS, our team is mapping the locations of each cancer diagnosis and attempting to identify areas of the state with increased incidence.

Impact of watersheds on the incidence of pediatric cancer in Nebraska

  1. The University of Nebraska College of Public Health and the Center for Environmental Health and Toxicology are evaluating the incidence of pediatric cancer and birth defects in the areas surrounding the multiple watersheds that exist within the State. Evaluations include the type of tumors or birth defects and their incidence compared to populations that do not live around watersheds.

STATE LEGISLATION & GOVERNMENT

Letters were sent
Contact with Senator Danielle Conrad
Legislative Hearing
Secured $1.5 in recurring funds

Nebraskan’s were challenged to write letters to Senators, Congressman, Mayors, Governors or any legislator they thought would listen to our state’s story about pediatric cancer.

Sen. Danielle Conrad proposed research funding of roughly $1 per state citizen that would be allocated toward pediatric cancer totaling $1.8 million through LB 764.

Private citizens, American Cancer Society and specialists from UNMC appeared at a legislative hearing where they gave testimony which ranged from personal stories to facts not previously known to many in our state, including where Nebraska ranked in incidence rates and mortality rates. The Appropriations Committee voted to include funding in the Nebraska state budget.
Through advocacy and grassroots organizing, Nebraska was able to secure $1.5 million dollars in recurring funding and the Appropriations Committee allotted $300,000 per year to go toward pediatric oncologist specialists along with matching fund from the Team Jack Foundation.
September 2013
Late 2013
January 2014
Beginning 2015

Read the full story from Mitch with PCAN

Contact your local state Senator

NATIONAL INFORMATION

0

children under the age of 19 are diagnosed with pediatric cancer annually in the US

Source: Curesearch.org

The average age of children diagnosed is six.

Source: Curesearch.org

Only 4% of US funding is solely dedicated to childhood cancer research

In 80% of kids, cancer has already spread to other areas of the body by the time it is diagnosed.

cause of death by disease in children is cancer

Source: Curesearch.org

In the last 20 years only 4

cancer treatments have been specifically developed and approved for children

Source: Curesearch.org

0

children are diagnosed with children’s cancer every year

Source:

The average age of children diagnosed is six.

Source: Curesearch.org

Only 4% of US funding is solely dedicated to childhood cancer research

In 80% of kids, cancer has already spread to other areas of the body by the time it is diagnosed.

cause of death by disease in children is cancer

Source: Curesearch.org

In the last 20 years only 4

cancer treatments have been specifically developed and approved for children

Source: Curesearch.org

We have compiled a list of foundations located right here in Nebraska that support children battling cancer and their families in a number of ways. Learn how you can donate and support the fight against childhood cancer!