I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical research of Cerebellar Ataxia. I didn’t know what to expect when Hill Day 2022 arrived. There were 4 of us to talk with federal government leaders representing Texas. Three of us had/have Ataxia, and one person is a full-time researcher of Cerebellar Ataxia. The congresspeople we talked with via Zoom, were all very nice and seemed to have a sincere interest in hearing what we were talking about and helping with funding. My understanding is that the awareness of Cerebellar Ataxia has greatly improved, but that awareness is not a large portion of our society as a whole.
I have lived with this progressive disease since 2009. I strongly feel that to say that Cerebellar Ataxia is disruptive is an understatement. For years, the person afflicted with this disease does not understand what’s happening to their body, and people around them understand even less. The awareness that Cerebellar Ataxia is destructive and affects many people is essential to funding research that has shown positive signs in understanding and treating the disease. I am excited to participate in Hill Day 2023. I see it as a great opportunity to be involved in the awareness that research funding is greatly needed to better understand this destructive disease.
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