RALEIGH – In honor of Childhood Cancer Awareness Month, Sen. Thom Tillis (R-NC) and Sen. Richard Burr (R-NC) recently welcomed Raleigh native and two-time cancer survivor Ashley Burnette and her family to Washington D.C. Tillis joined the family at the Hyundai Hope on Wheels gala celebrating the organization’s donation of $100 million to pediatric cancer research over the last seventeen years.
“The Hope on Wheels program is a tremendous success, awarding $10.5 million this year alone in research grants to help end childhood cancer. The gala brought together the young heroes who have battled pediatric cancer, the advocates who are raising their voices and lending their hands to raise pediatric cancer awareness, and the incredible researchers who are working tirelessly to find a cure,” said Tillis. “It was a honor to meet Ashley, who is now sharing her inspiring and heroic story to children and families across the nation.”
Ashley is a National Youth Ambassador for the Hope on Wheels Foundation, traveling the country telling her story of overcoming cancer. While in the nation’s capital, She also met with Burr, who this week filed the Advancing Targeted Therapies for Rare Diseases Act of 2015. The bill would help advance the development of drugs for patients with serious or life-threatening rare genetic diseases.
“This is an exciting era of medicine that holds great potential for personalizing treatments to improve and save lives,” Burr said in a statement. “This bipartisan legislation will help fulfill this potential for patients in North Carolina and across our nation by facilitating the development of targeted drugs for rare diseases. I’m proud of North Carolina’s innovators and the work they are doing on behalf of patients, and it is my hope that this legislation will facilitate many life-saving treatments that give hope to families who are battling rare diseases.”
Supporters say the bill does not bypass the FDA’s approval process for medical treatments. The legislation is aimed at providing legal clarity so that cancer treatment investigators can use their prior research to expand the scope of study in developing targeted therapies. The Burnettes benefited from such targeted therapies in Ashley’s treatment for cancer.
“This morning we met with Sen. Richard Burr on the Capitol steps and were able to thank him for introducing this legislation. It will help get therapies to market faster and advance the development of targeted drugs for patients like Ashley with serious or life-threatening rare genetic diseases,” said Nicole Burnette, Ashley’s mother.
Diagnosed at age 7 with stage IV Neuroblastoma and later with Non-Hodgkin’s Lymphoma, Ashley fought through chemotherapy treatments, surgeries, radiation, and a stem cell transplant at UNC Children’s Hospital in Chapel Hill. Doctors declared her to be cancer free a 18 months ago, launching the family into the national spotlight as advocates for pediatric cancer research.
Now 12 years old, Ashley has gained a tremendous amount of poise and a drive to end childhood cancer. Her parents Nicole and Hunter, along with older sister Olivia, have all dedicated themselves to joining her in the crusade. This week they recruited two senators into the fight.
“We were honored to meet Sen. Tillis. We truly appreciate his incredible speech at the Hope on Wheels Gala and his participation the events this weekend. He sat with Ashley and talked all evening. They were having a big time,” said Hunter, Ashley’s father. “It will truly be a great day when we end this terrible disease.”
Each year, 15,000 children are diagnosed with cancer, making it the leading cause of death by disease for children in the U.S. Hope on Wheels’ D.C. Days brought together families affected by cancer, their legislators and many of the country’s leading pediatric oncologists to draw attention to the need for research into next generation treatments for pediatric cancer.
“The future in the fight against cancer is a public-private partnership, where everyone in industry, government and academia are all-in together for a cure,” said Tillis. “North Carolina is blessed to be home to world-renowned research institutions like UNC and Duke that are leading in cutting-edge innovation for cancer therapies, diagnostics and interventions. Sustained progress requires elected officials in Washington to step up, particularly when it comes to reliably funding the NIH, but it also depends on the private sector, led by companies like Hyundai, to continue to serve as benefactors for cancer research.”
According to the American Cancer Society, nearly 16,000 children in the United States will be newly diagnosed with cancer this year and approximately 2,000 under age nineteen will die of the disease. The National Cancer Institute at the federally funded National Institutes of Health is budgeted for $4.95 billion this year, slightly up from fiscal year 2013-2014. NCI conducts research and provides grants and coordination for cancer study at universities and hospitals around the world.