Heislers lobby for cancer research
June 22-28, Randi Heisler and her son, Macen, 9, went to Washington D.C. to lobby on behalf of the Alliance for Childhood Cancer. It was the largest lobbying group the alliance has had with more than 250 constituents. The lobbying regarded a request for $5.26 billion for the National Cancer Institute in fiscal year 2015, so that childhood cancer research can be adequately funded.
Constituents also asked state representatives to co-sponsor the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act. This Act was signed into law in 2008, and currently needs to be reauthorized.
The Heislers were the only representatives from North Dakota and spoke with Sen. Heidi Heitkamp, D-N.D.; Sen. John Hoeven, R-N.D.; and Rep. Kevin Cramer’s (R-N.D.) staff.
“All of our state representatives were super supportive,” Randi Heisler said. “They have yet to co-sponsor the bill, but we feel confident they will in the future.”
Aspen Heisler, 5, was diagnosed with Neuroblastoma when he was one. Neuroblastoma is a cancerous tumor that develops from nerve tissue, and typically in infants and children. Aspen still has a tumor in his spine, which is inoperable, and suffers from the side effects of treatment. The tumor is stable and hasn’t grown since surgery nearly two years ago. He will receive a scan in Minneapolis next week and his mother is hopeful radiation and removal can be done once the spine develops more.
Aspen is somewhat limited in mobility and wears a body brace, but continues to live a happy life. Aspen plans to enter kindergarten this year.
Randi and older son Macen attended seven meetings with the North Dakota, Minnesota and Nebraska representatives.
“Macen participated fully and explained his brother Aspen’s story,” Randi Heisler said. “Overall, we were well received and can’t wait to go back next year.”
For more information on the alliance visit allianceforchildhoodcancer.org.
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