ALS Patient, Activist Ady Barkan Lobbies for Health Care - NBC Chicago
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ALS Patient, Activist Ady Barkan Lobbies for Health Care



    ALS Patient, Activist Ady Barkan Lobbies for Health Care

    Despite dying from ALS, Ady Barkan is traveling the country to call attention to health care, he even stopped by Chicago Tuesday. NBC 5's Mary Ann Ahern has the details.

    (Published Tuesday, July 17, 2018)

    Ady Barkan has always been an activist but since his ALS diagnosis, his concerns—whether on taxes or health care--have focused on families, seniors and those with disabilities. “I am traveling across the country from California to Maine," Barkan expressed.

    The average life expectancy with victims of ALS is two to five years. Barkan was diagnosed nearly two years ago.

    The 35-year-old activist who can no longer walk and is losing his ability to speak due to this neuro-degenerative disease however, has a dying wish—to lobby for health care.

    Supporters joined him outside Congressman Peter Roskam's office Tuesday in West Chicago.

    Barkan hoped to meet with Roskam, but the congressman was in Washington D.C. In addition, a meeting with Roskam's staff was unable to be arranged because of the restrictions imposed.

    "Our office has a long-standing policy where we don't allow any cameras, or any recording devices, or any media in our meetings," said spokeswoman Veronica Vera.

    Barkan said he wouldn't meet either without the presence of the media and instead, held a rally outside Roskam's office.

    "This is what it means to live in a democracy," said Alison Helms, a supporter who partook in Tuesday's rally while carrying her baby son Elliot. "It's to do something when we're dissatisfied with the results we are seeing."

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