{"id":28776,"date":"2026-05-08T07:02:35","date_gmt":"2026-05-08T12:02:35","guid":{"rendered":"https:\/\/www.ataxia.org\/?p=28776"},"modified":"2026-05-12T12:38:50","modified_gmt":"2026-05-12T17:38:50","slug":"advocating-for-accessibility-in-st-louis","status":"publish","type":"post","link":"https:\/\/www.ataxia.org\/advocating-for-accessibility-in-st-louis\/","title":{"rendered":"Advocating for Accessibility in St. Louis"},"content":{"rendered":"\t\t
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Guest Author:<\/strong> Shannon Dunphy Lazo<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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The Advocate Spotlight highlights members of the Ataxia community who are creating change through advocacy, awareness, education, and community involvement. In this series, advocates share the work they\u2019re doing in their local communities and beyond to help improve the lives of people living with Ataxia.<\/em><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Advocate Spotlight: Shannon Dunphy Lazo<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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I am one of about 25 people\u00a0advising\u00a0the City of St Louis and a local community development organization, Great Rivers Greenway, as a member of the Universal Design Group\u00a0(UDG). Our Charter states, \u201cUniversal Design means designs that allow everybody to go everywhere and enjoy nearly every aspect of a development \u2013 to the extent of his or her capacity \u2013 and to be able to do so with friends and family, including those who are not disabled,\u201d and we work to \u201cprovide recommendations, metrics, strategies, and tactics to achieve a universal and inclusive vision.\u201d\u00a0<\/span>\u00a0<\/span><\/p>

In other words, we advise on how to make designs for use by anyone and everyone \u2013\u00a0including\u00a0us with disabilities.\u00a0We address inclusivity in universal design and planning.\u00a0We aim to create spaces that are usable by everyone, with particular attention to the needs of people with disabilities. As the\u00a0director of\u00a0the\u00a0peer-support group,\u00a0STL Ataxia, I specifically advocate for STL Ataxia and the larger ataxia community.\u00a0At\u00a0a very basic\u00a0level, you might see universal design every day in something as simple as curb cuts and ramps, wayfinding signage, or color schemes- features that affect the Ataxia community.<\/span>\u00a0<\/span><\/p>

Since its start, the UDG has played an active advisory role in providing valuable feedback on a range of city planning and design initiatives. These projects include the development of a sports facility, a museum, greenways, traffic calming strategies, zoning, and the comprehensive 5-year City Plan.\u00a0Architects and designers often\u00a0participate\u00a0in UDG meetings, and as well as hearing our recommendations\/concerns, they can answer questions about UD in their projects across the City of St Louis.\u00a0<\/span>\u00a0<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Joan King and Shannon at\u00a0<\/span><\/span>Washington University in St Louis<\/span>\u00a0Rare Disease Day Symposium<\/span><\/span><\/em><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Several years ago, St Louis built a new soccer stadium for its new MLS team, St Louis City SC. Outside of the stadium is a public installation that pays tribute to the historic Mill Creek neighborhood that once stood on the site of the stadium. We were brought in to advise on its design. We advised on aspects including reach by wheelchair users, placement of educational panels in Braille and at an appropriate height, font, color\/contrast, the dimensions of the water feature, and accessibility of the various parts that allow people to move among and roll in between.<\/span> <\/span><\/p>\n

We also considered the greenway leading up to the stadium, placement of paved areas and grass, audio and visual wayfinding signage and benches, surface materials, pedestrian walkways and bicycle lanes, and soccer fan flow and interaction.<\/span> <\/span><\/p>\n

My advocacy also includes drawing attention to Universal Design considerations for people with disabilities and Ataxians who use durable medical equipment (DME), such as rollators, wheelchairs, mobility scooters, and canes. Ataxians often face additional issues including limited vision, slow and unsteady walking, fatigue, and overstimulation, and my goal is to ensure all these issues are prioritized and receive the attention and consideration they deserve. We strive for proper and inclusive access throughout the city!<\/span> <\/span><\/p>\n

I would suggest to other Ataxians and supporters to contact their local equivalent Office on the Disabled or inquire about community member input with your city. It also pays to network! Participate in expos, exhibit opportunities, or Rare Disease Day in the community, health clinic, or local hospital; you may meet people who can guide you or are looking for input!<\/span> <\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Read Our Latest Blogs<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\n\t\t\t\tBen Williamson\t\t\t<\/a>\n\t\t<\/h3>\n\t\t\t\t
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Living and Dying with Spinocerebellar Ataxia Type 7: A Carer\u2019s Perspective Affiliation: Husband and primary carer of patient with confirmed SCA7 (ATXN7 gene, 10\/49 CAG repeats) Background Spinocerebellar Ataxia Type 7 (SCA7) is a rare, autosomal dominant neurodegenerative disorder characterized by progressive cerebellar ataxia and cone-rod retinal dystrophy. The following Read More…<\/a><\/p>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/article>\n\t\t\t\t

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\n\t\t\t\n\t\t\t\tMaitreyi Viswanathan\t\t\t<\/a>\n\t\t<\/h3>\n\t\t\t\t
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http:\/\/youtu.be\/sYccDzT25eY?si=f6GkonkY4FvsyFHy The video above is from Maitreyi’s personal YouTube channel, in which she discusses her experiences living with Ataxia. Mature topics are discussed, viewer discretion is advised. When Were You Diagnosed? Which Type (If Known)? Toronto, ON, Canada – SCA Type 2 How Has Ataxia Impacted Your Life? Negatively. This all Read More…<\/a><\/p>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/article>\n\t\t\t\t

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\n\t\t\t\n\t\t\t\tAmplifying the Voice of Ataxians: Feedback from members of the NAF community on Ataxia Symptoms\t\t\t<\/a>\n\t\t<\/h3>\n\t\t\t\t
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The National Ataxia Foundation (NAF) led a survey of people with\u00a0Ataxia and their families in January 2025. The goal of the survey was to get feedback on NAF\u2019s services, but also\u00a0to\u00a0learn more about the experience of living with\u00a0Ataxia.\u00a0In May 2026, NAF staff members published a scientific paper in the journal\u00a0The Read More…<\/a><\/p>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/article>\n\t\t\t\t

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When I turned 20, I started to notice something was different about me. I had a brain MRI, which showed that I probably had Ataxia. My mom and I went to the doctor for further examination, and he confirmed it. To be 100% sure, they performed genetic testing, which confirmed Read More…<\/a><\/p>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/article>\n\t\t\t\t

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\n\t\t\t\n\t\t\t\tAtaxia Med News – February 2026\t\t\t<\/a>\n\t\t<\/h3>\n\t\t\t\t
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This is a periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org\/JoinNAF. Hello from NAF’s Clinical Services Team Hello Fellow HCP’s, When I think of February, the first thing Read More…<\/a><\/p>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/article>\n\t\t\t\t

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\n\t\t\t\n\t\t\t\tAdvocating for Accessibility in St. Louis\t\t\t<\/a>\n\t\t<\/h3>\n\t\t\t\t
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Guest Author: Shannon Dunphy Lazo The Advocate Spotlight highlights members of the Ataxia community who are creating change through advocacy, awareness, education, and community involvement. In this series, advocates share the work they\u2019re doing in their local communities and beyond to help improve the lives of people living with Ataxia. Read More…<\/a><\/p>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/article>\n\t\t\t\t<\/div>\n\t\t\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

Guest Author: Shannon Dunphy Lazo The Advocate Spotlight highlights members of the Ataxia community who are creating change through advocacy, awareness, education, and community involvement. 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