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Prompted by Bunker Hill family’s advocacy efforts

SPRINGFIELD – Legislation to set aside May 17 of each year to raise awareness of a rare and incurable form of childhood brain cancer was approved Wednesday by the Illinois Senate.

The measure, sponsored by State Senator Andy Manar (D-Bunker Hill), was prompted by the advocacy efforts of Bunker Hill mother Kim Skief, whose 11-year-old daughter, Grace, died from Diffuse Intrinsic Pontine Glioma, or DIPG, in 2015.

The Senate approved the measure, Senate Bill 2254, 56-0. It was sent to the House for consideration.

“Grace’s story is a simple reminder that medical cures and care, sadly, are not guaranteed to all of us. That’s why I’m working with her mother to help raise awareness about this childhood cancer,” Manar said. “Although DIPG is rare, when it strikes it is painful, and unfortunately it is quick.”

DIPG is an aggressive form of cancer that targets children almost exclusively – about 300 each year in the United States. It affects the part of the brain that controls the heartbeat, breathing, swallowing, sight and eye movement, and balance. It is in operable, and the survival rate is less than 1 percent.

Grace Skief was a fifth-grader when she was diagnosed with DIPG in April 2015. She died three months later, on July 31, 2015.

Twenty other states have set aside May 17 to raise awareness of this heart-breaking childhood cancer and the lack of a cure for it.

Present in the Senate gallery during Wednesday’s vote were Kim Skief and her son, James, both of Bunker Hill; and Grace’s grandmother, Carol Robbins of Alton. Manar thanked them for their advocacy and their courage.

“Any number of things could happen after tragedy strikes a family, as we often see when families visit us in the Senate,” he said. “At the lowest point the Skief family somehow mustered the strength and courage to move on and make something positive out of what undoubtedly is the most difficult situation anybody could go through.”

For more information about DIPG, visit http://www.defeatdipg.org and http://www.cancer.gov.

Category: People of the 48th

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KINCAID – A pair of Democratic state senators visited a downstate coal plant to get a better picture of Illinois’ energy community.

Senator Andy Manar (D-Bunker Hill) and the new chairman of the Senate's Energy and Public Utilities Committee, Senator Michael Hastings of Tinley Park, toured the Kincaid Power Station on March 28.

Hastings said such visits help put his role as energy committee chairman into perspective.

“I’m a firm believer that the only way to make responsible and educated decisions is to go out to these communities and tour these facilities to ensure we craft policies that modernize and safeguard Illinois’ energy security,” he said. “As the new energy chairman, I’m eager to learn more and gain a complete picture on how the energy decisions we make in Springfield impact communities across our state.”

The Kincaid Power Station, owned by Dynegy, is operated by 144 employees, many of whom reside throughout Christian and Sangamon counties. The plant pays about $17 million annually in wages and benefits that support workers and their families.

“This tour is the first step in our partnership to fight to protect these power plants that serve as a vital economic asset in our communities and throughout the state of Illinois,” Manar said. “The coal industry has played an important role in the economic development of our communities, and we plan to keep it that way.”

Manar, a champion of downstate workers, facilitated the tour of the Kincaid plant to assist Hastings in his effort to better understand the state’s energy community. Specifically, Manar stressed the importance of power plants to his 48th Senate District, noting they support hundreds of jobs and generate billions of dollars in economic activity in downstate Illinois.

“Our state’s energy community has done a tremendous job ensuring Illinois has a competitive edge in our global economy,” Hastings said. “I look forward to coming up with policies to move us forward while protecting workers like those at the Kincaid Power Station.”

Manar had similar sentiments.

“I’m proud to show off the great work the employees at the Kincaid Power Plant do every day to help ensure the lights stay on in homes across Illinois,” Manar said.

Manar and Hastings plan to visit the Coffeen Power Station, also owned by Dynegy, in the coming weeks.

Category: People of the 48th

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SPRINGFIELD – State Senator Andy Manar (D-Bunker Hill) welcomed Ava Wiley of Rochester as his senator for the day at the Capitol this week.

Wiley, 13, is a seventh grader at Rochester Junior High School. Her hobbies include soccer, acting and following government and politics. Her mother, Kim Wiley, signed her up to be senator for the day as a Christmas gift.

During Wiley’s visit Wednesday, she toured the Capitol, attended a Senate budget hearing with Manar and accompanied him onto the Senate floor where she watched members debate and vote on legislation about firearms and school funding.

Senator Manar chatted with Wiley about her visit to the Capitol, about being a seventh grader in Rochester and about her interest in politics:

Category: People of the 48th

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SPRINGFIELD — Senator Andy Manar welcomed the Christian County LEADership Academy to the Illinois Capitol.

Members of the LEAD organization — a project of the Greater Taylorville Chamber of Commerce and the Christian County University of Illinois Extension — visited March 7.

Christian County LEAD started in 2005. It's an annual program for community leaders who want to become better informed about issues and learn how to use their skills and talents to improve business prospects, family life and their environment. The organization encourages networking, personal growth and enhanced interpersonal skills. The program has more than 200 graduates.

"It's a great program that the chamber runs, and I'm proud to host them every year. Just for about 45 minutes to an hour in the state Senate, and we just have a nice dialogue," Manar told WTIM radio in Taylorville about the group's visit.

"One of the good things about the job is you get to see people in the Senate in the role in Springfield and show them that it's not always just a partisan morass, that there are ways to get along and to advance issues that are important to both Democrats and Republicans."

Category: People of the 48th