Rare Disease Week in D.C. featured in Florida Newspaper

“Cape woman fights for rare-illness sufferers, honors her son with advocacy.”

A few weeks ago, Hickman, who now lives in Cape Coral, went once again to Washington, D.C., to speak to politicians for the Rare Disease Legislative Conference & Lobby Day.

This is her fifth time to Capitol Hill and it coincided with Rare Disease Week. She was heartened by what she saw there. Hickman has spoken to countless congressman, senators and aides. She’s also recognized due to “Fight to Live,” a documentary by two-time Academy Award-winning filmmaker Barbara Kopple that looks at the challenges of getting investigational drugs to people with terminal diseases. Both Hickman and Erik are featured. Symptoms began with the former football player dropping items. They thought he had carpal tunnel. The beloved coach, friend and father to a little girl named Lilly began struggling to walk and talk.

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