Kayla McKeon

Kayla McKeon, a central New York native, is the manager of grassroots advocacy for the National Down Syndrome Society. She is the first registered lobbyist with Down syndrome, according to the NDSS. 

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There are thousands of registered lobbyists in Washington. But there is only one Kayla McKeon. 

The National Down Syndrome Society hired McKeon, a Cicero native, to serve as manager of grassroots advocacy. According to the organization, she is the first registered lobbyist with Down syndrome. 

McKeon's first day was Monday, Oct. 30. 

The job offer came at a meeting organized by McKeon and U.S. Rep. John Katko, a Syracuse-area Republican. One of the attendees at the discussion was Sara Hart Weir, president and CEO of the National Down Syndrome Society. 

During a phone interview Friday, McKeon admitted that she initially declined the offer. But Weir was relentless. She wanted McKeon to join her team. 

On the second try, McKeon accepted. 

"I love my job," McKeon said. "This has always been my dream and I'm following my dream." 

As manager of grassroots advocacy, McKeon's responsibilities will include educating others about the demand for employment among those with Down syndrome and representing the organization on Capitol Hill. 

Before joining the National Down Syndrome Society as a full-time employee, McKeon was a member of the group's self-advocate advisory board and participated in the DS-Ambassador program. She was the organization's self-advocate of the year in 2016. 

McKeon's previous work experience includes an internship at Katko's Syracuse office. In a statement, Katko called her a "tremendous asset to my district team." 

"I'm very proud of my good friend and tremendous advocate, Kayla McKeon, as she begins her new position with NDSS," Katko said. "While she is just now moving to Washington to advocate on the national stage, she and her family have worked for years locally to enrich the lives of people with Down syndrome." 

He added, "We're all incredibly proud of her as she moves on to this next chapter of her life. I have no doubt she will continue to do great things in her work to advance the mission of NDSS, to improve the lives of people with Down syndrome and to ensure that people of all abilities are able to live full and independent lives." 

McKeon has been getting acquainted with her new office. Last week, she learned how to use the computer system. This week, she will begin focusing on different projects. 

Her goal is to be a role model for others. 

"We are most definitely ready, willing and able to do anything we set our minds to — getting a job, driving a car, going to college," she said. "We want to showcase our abilities, not our disabilities." 

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