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Bridgeton resident urges council to recognize rare-disease awareness day
Summary
During public comment Mary Schultz described hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS), provided informational materials to the clerk and council, and asked the council to recognize a World Awareness Day for HSP; Council member Hood later asked staff to prepare a resolution.
Mary Schultz, a Bridgeton resident, addressed the council during the public-comment period on Oct. 1 to describe hereditary spastic paraplegia (HSP) and a related condition, primary lateral sclerosis (PLS), and to seek recognition for a World Awareness Day for HSP.
Schultz said she lives in Ward 4 and provided the city clerk and council members with a packet of information and her contact card. She described HSP as a rare, progressive neurological disorder that primarily affects lower-body movement; she said it differs from amyotrophic lateral sclerosis (ALS) because HSP in her case does not affect upper-body muscles and breathing but can include optic-nerve degeneration. Schultz said roughly 20 people in Missouri and between 500 and 600 people in the United States have HSP, and she identified herself as an ambassador for an HSP-related foundation.
Council members thanked Schultz for her advocacy. Later in the meeting Council member Hood asked staff to prepare a resolution for HSP/PLS World Awareness Day to be presented at the next meeting.
No formal action to adopt a proclamation or resolution occurred during public comment; a motion to prepare a resolution was proposed later but no adoption of that resolution was recorded on Oct. 1.
