{"id":28850,"date":"2026-05-15T11:09:26","date_gmt":"2026-05-15T16:09:26","guid":{"rendered":"https:\/\/www.ataxia.org\/?p=28850"},"modified":"2026-05-19T11:16:23","modified_gmt":"2026-05-19T16:16:23","slug":"amplifying-the-voice-of-ataxians-feedback-from-members-of-the-naf-community-on-ataxia-symptoms","status":"publish","type":"post","link":"https:\/\/www.ataxia.org\/amplifying-the-voice-of-ataxians-feedback-from-members-of-the-naf-community-on-ataxia-symptoms\/","title":{"rendered":"Amplifying the Voice of Ataxians: Feedback from members of the NAF community on Ataxia Symptoms"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"28850\" class=\"elementor elementor-28850\" data-elementor-post-type=\"post\">\n\t\t\t\t<div class=\"elementor-element elementor-element-278417c0 e-flex e-con-boxed e-con e-parent\" data-id=\"278417c0\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-57c3a9bc elementor-widget elementor-widget-image\" data-id=\"57c3a9bc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"640\" height=\"335\" src=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-1024x536.png\" class=\"attachment-large size-large wp-image-28855\" alt=\"\" srcset=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-1024x536.png 1024w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-300x157.png 300w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-768x402.png 768w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3.png 1200w\" sizes=\"(max-width: 640px) 100vw, 640px\" \/>\t\t\t\t\t\t\t\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\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-102d383f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"102d383f\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-4591c54\" data-id=\"4591c54\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-6a47916c elementor-widget elementor-widget-spacer\" data-id=\"6a47916c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-58be01df elementor-widget elementor-widget-text-editor\" data-id=\"58be01df\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span class=\"TextRun SCXW90377314 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW90377314 BCX0\">The National Ataxia Foundation (NAF) led a survey of people with\u00a0<\/span><span class=\"NormalTextRun SCXW90377314 BCX0\">A<\/span><span class=\"NormalTextRun SCXW90377314 BCX0\">taxia and their families in January 2025. The goal of the survey was to get feedback on NAF\u2019s services, but also\u00a0<\/span><span class=\"NormalTextRun SCXW90377314 BCX0\">to\u00a0<\/span><span class=\"NormalTextRun SCXW90377314 BCX0\">learn more about the experience of living with\u00a0<\/span><span class=\"NormalTextRun SCXW90377314 BCX0\">A<\/span><span class=\"NormalTextRun SCXW90377314 BCX0\">taxia.\u00a0<\/span><span class=\"NormalTextRun SCXW90377314 BCX0\">In May 2026, NAF staff members published a scientific paper in the journal\u00a0<\/span><\/span><span style=\"text-decoration: underline;\"><a class=\"Hyperlink SCXW90377314 BCX0\" href=\"https:\/\/link.springer.com\/article\/10.1007\/s12311-026-02012-3\" target=\"_blank\" rel=\"noreferrer noopener\"><span class=\"TextRun Underlined SCXW90377314 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW90377314 BCX0\" data-ccp-charstyle=\"Hyperlink\">The Cerebellum<\/span><\/span><\/a><\/span><span class=\"TextRun SCXW90377314 BCX0\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW90377314 BCX0\">, sharing findings from this survey.\u00a0<\/span><\/span><span class=\"EOP SCXW90377314 BCX0\" data-ccp-props=\"{}\">\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-7fd66750 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"7fd66750\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-63981bf4\" data-id=\"63981bf4\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-77ad8d57 elementor-widget elementor-widget-heading\" data-id=\"77ad8d57\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">What were the results of the survey? <\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1aa31cc9 elementor-widget elementor-widget-text-editor\" data-id=\"1aa31cc9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span data-contrast=\"auto\">This survey\u00a0asked people with Ataxia\u00a0three main questions:<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><ul><li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">What is the first symptom\u00a0you experienced?\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li><\/ul><ul><li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\">What symptoms do you\u00a0experience now?<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li><\/ul><ul><li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"auto\">What single\u00a0symptom has\u00a0the biggest impact on your day-to-day life?<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li><\/ul><p><span data-contrast=\"auto\">Half of people said that poor balance was their first symptom (51%). A quarter said that poor coordination was their first symptom (24%). Coordination included things like moving your arms and legs smoothly or repetitively, but also included smaller coordination tasks like typing on a computer or handwriting. <\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><p><span data-contrast=\"auto\">The NAF community reported a wide variety of symptoms they are currently experiencing. The\u00a0top\u00a0three most common symptoms were\u00a0poor balance (92%), poor coordination (70%), and increased fatigue (70%).\u00a0Fatigue is the feeling of extreme tiredness or lack of energy.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><p><span data-contrast=\"auto\">When forced to choose one symptom that has\u00a0the\u00a0biggest impact\u00a0on daily life, 65% of people surveyed chose impaired balance.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><p><span data-contrast=\"auto\">Some differences were found in answers from people with\u00a0different\u00a0types\u00a0of\u00a0Ataxia. For example, impaired vision was\u00a0more\u00a0commonly reported as a first symptom by people with SCA27B\u00a0than\u00a0other types of\u00a0Ataxia.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><p><span data-contrast=\"auto\">Responses also\u00a0differed\u00a0based on someone\u2019s progression or stage of Ataxia.\u00a0People with more severe symptoms\u00a0were more likely to report poor balance as the biggest impact on their lives\u00a0compared to people with milder symptoms.\u00a0All data was self-reported. This\u00a0means that people taking the survey were assessing their own\u00a0symptom\u00a0severity (or the symptoms of their loved ones).\u00a0<\/span><span data-ccp-props=\"{}\">\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-7458d341 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"7458d341\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-1e24ca1\" data-id=\"1e24ca1\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-15b64b1 elementor-widget elementor-widget-heading\" data-id=\"15b64b1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\"><a href=\"http:\/\/Who%20completed%20the%20survey?%20\">Who completed the survey? <\/a><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-736b01a3 elementor-widget elementor-widget-text-editor\" data-id=\"736b01a3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span class=\"TextRun SCXW119334650 BCX0\" lang=\"EN-US\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text; color: #000000; font-size: 12pt; line-height: 20.85px; font-family: Aptos, Aptos_EmbeddedFont, Aptos_MSFontService, sans-serif; font-variant-ligatures: none !important;\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">This survey was open to all members of the NAF community who have Ataxia or are caregivers to a loved one with Ataxia.\u00a0<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">Overall, we had 680 participants. This included 587\u00a0<\/span><span class=\"NormalTextRun SpellingErrorV2Themed SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text; background-position: 0px 100%; background-repeat: repeat-x; border-bottom: 1px solid transparent;\">Ataxians<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">\u00a0and\u00a0<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">93 caregivers. Over half of the participants were women.\u00a0<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">Most<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">\u00a0participants (81%) live in the United States.\u00a0<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">O<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">ther countries with large numbers of survey participants included Canada, the United Kingdom, and Australia.\u00a0<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">The survey was only available in English, which\u00a0<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">likely limited<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">\u00a0the participation of NAF members<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">\u00a0from countries where English\u00a0<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">isn\u2019t<\/span><span class=\"NormalTextRun SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text;\">\u00a0as common.\u00a0<\/span><\/span><span class=\"EOP SCXW119334650 BCX0\" style=\"-webkit-user-drag: none; -webkit-tap-highlight-color: transparent; margin: 0px; padding: 0px; user-select: text; color: #000000; font-size: 12pt; line-height: 20.85px; font-family: Aptos, Aptos_EmbeddedFont, Aptos_MSFontService, sans-serif;\" data-ccp-props=\"{}\">\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-6260de9 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"6260de9\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-32d6055\" data-id=\"32d6055\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-0e7fc4e elementor-widget elementor-widget-heading\" data-id=\"0e7fc4e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\"><a href=\"http:\/\/Who%20completed%20the%20survey?%20\">Why publish the findings in a scientific journal? <\/a><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0eed73a elementor-widget elementor-widget-text-editor\" data-id=\"0eed73a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span data-contrast=\"auto\">One thing we hear at NAF a lot is how folks\u00a0wish\u00a0that their\u00a0doctor knew more about Ataxia.\u00a0It is\u00a0very common\u00a0for people with Ataxia to be treated and supported by clinicians who, before meeting this patient, had never seen or spoken to someone\u00a0with Ataxia. This can be\u00a0very challenging.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><p><span data-contrast=\"auto\">A scientific journal is a\u00a0publication\u00a0that\u00a0shares\u00a0new, peer-reviewed research findings within specific disciplines\u00a0or topic areas. These findings are treated by clinicians and researchers as more rigorous or\u00a0accurate\u00a0than\u00a0some other\u00a0types\u00a0of\u00a0reports since the studies are peer-reviewed. Peer review means that before publication, articles are evaluated by independent\u00a0experts\u00a0to ensure technical quality, validity, and significance.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><p><span data-contrast=\"auto\">When a doctor is unfamiliar with a topic,\u00a0one of the first things they will do is look for\u00a0scientific journal\u00a0articles to learn more.\u00a0Since Ataxia is rare, there is less information\u00a0available than for more common disorders like Parkinson Disease or\u00a0Alzheimer Disease.\u00a0So, we wanted to share these findings in a scientific journal for two main reasons:<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p><ul><li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"auto\">Increase\u00a0the\u00a0overall\u00a0amount of Ataxia information available through scientific journals\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li><\/ul><ul><li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"auto\">Specifically increase the information available about\u00a0Ataxia\u00a0patients\u2019\u00a0preferences and opinions on symptoms. There is even less information available from the perspective of people living with Ataxia.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li><\/ul><p><span data-contrast=\"auto\">We also made sure that this study is open\u00a0access. This means anyone can read the findings. Most of the time scientific journals have paywalls, which make it difficult to\u00a0access information. We wanted people to\u00a0learn about the experience of\u00a0Ataxians\u00a0no matter where they are in the world.\u00a0<\/span><span data-ccp-props=\"{}\">\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5a92246 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5a92246\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-cdc8bce\" data-id=\"cdc8bce\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-439716c elementor-widget elementor-widget-heading\" data-id=\"439716c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\"><a href=\"http:\/\/Who%20completed%20the%20survey?%20\">What is next? <\/a><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-8789797 elementor-widget elementor-widget-text-editor\" data-id=\"8789797\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span class=\"NormalTextRun SCXW168558575 BCX0\">This is just the first step in sharing information collected during the NAF 2025 community survey. Analyzing this data, writing up the paper, and having it edited through peer review took over a year to do. But this is only the first half of the data. We are now working on a second paper, which focuses on the feedback we got about how people with Ataxia access healthcare. We are currently working on this<\/span><span class=\"NormalTextRun SCXW168558575 BCX0\">.\u00a0<\/span><span class=\"NormalTextRun SCXW168558575 BCX0\">We\u2019ll<\/span><span class=\"NormalTextRun SCXW168558575 BCX0\">\u00a0give you\u00a0<\/span><span class=\"NormalTextRun SCXW168558575 BCX0\">an update once it is done.<\/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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-d08fa0d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d08fa0d\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-0f4bf23\" data-id=\"0f4bf23\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t<div class=\"elementor-element elementor-element-bba6603 e-flex e-con-boxed e-con e-parent\" data-id=\"bba6603\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-39db09e elementor-align-center elementor-widget elementor-widget-button\" data-id=\"39db09e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/link.springer.com\/article\/10.1007\/s12311-026-02012-3\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Read the Full Paper Here<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6786062 elementor-align-center elementor-widget elementor-widget-button\" data-id=\"6786062\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/www.ataxia.org\/state-of-naf\/\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">See How Community Voices Guide Our Work<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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\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<section class=\"elementor-section elementor-top-section elementor-element elementor-element-124cc7f0 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"124cc7f0\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-43344dd2\" data-id=\"43344dd2\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-33dca85 elementor-widget elementor-widget-spacer\" data-id=\"33dca85\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"spacer.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-spacer\">\n\t\t\t<div class=\"elementor-spacer-inner\"><\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-163d1131 elementor-widget elementor-widget-heading\" data-id=\"163d1131\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Read Our Latest Blogs<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3c747d65 elementor-grid-3 elementor-grid-tablet-2 elementor-grid-mobile-1 elementor-widget elementor-widget-portfolio\" data-id=\"3c747d65\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;row_gap&quot;:{&quot;unit&quot;:&quot;px&quot;,&quot;size&quot;:5,&quot;sizes&quot;:[]},&quot;columns&quot;:&quot;3&quot;,&quot;columns_tablet&quot;:&quot;2&quot;,&quot;columns_mobile&quot;:&quot;1&quot;,&quot;item_ratio&quot;:{&quot;unit&quot;:&quot;px&quot;,&quot;size&quot;:0.66,&quot;sizes&quot;:[]},&quot;item_gap&quot;:{&quot;unit&quot;:&quot;px&quot;,&quot;size&quot;:&quot;&quot;,&quot;sizes&quot;:[]}}\" data-widget_type=\"portfolio.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-portfolio elementor-grid elementor-posts-container\" role=\"list\">\n\t\t\t\t<article class=\"elementor-portfolio-item elementor-post  post-27258 post type-post status-publish format-standard has-post-thumbnail hentry category-blog category-member-stories tag-care-partners\" role=\"listitem\">\n\t\t\t<a class=\"elementor-post__thumbnail__link\" href=\"https:\/\/www.ataxia.org\/ben-williamson\/\">\n\t\t\t\t<div class=\"elementor-portfolio-item__img elementor-post__thumbnail\">\n\t\t\t<img decoding=\"async\" width=\"300\" height=\"157\" src=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Ben-Williamson-Featured-Image-300x157.png\" class=\"attachment-medium size-medium wp-image-27306\" alt=\"\" srcset=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Ben-Williamson-Featured-Image-300x157.png 300w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Ben-Williamson-Featured-Image-1024x536.png 1024w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Ben-Williamson-Featured-Image-768x402.png 768w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Ben-Williamson-Featured-Image.png 1200w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t<\/div>\n\t\t\t\t<div class=\"elementor-portfolio-item__overlay\">\n\t\t\t\t<h3 class=\"elementor-portfolio-item__title\">\n\t\tBen Williamson\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t<article class=\"elementor-portfolio-item elementor-post  post-27259 post type-post status-publish format-standard has-post-thumbnail hentry category-blog category-member-stories\" role=\"listitem\">\n\t\t\t<a class=\"elementor-post__thumbnail__link\" href=\"https:\/\/www.ataxia.org\/maitreyi-viswanathan\/\">\n\t\t\t\t<div class=\"elementor-portfolio-item__img elementor-post__thumbnail\">\n\t\t\t<img decoding=\"async\" width=\"300\" height=\"157\" src=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Maitreyi-Member-story-Website-Featured-Image-300x157.png\" class=\"attachment-medium size-medium wp-image-27260\" alt=\"\" srcset=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Maitreyi-Member-story-Website-Featured-Image-300x157.png 300w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Maitreyi-Member-story-Website-Featured-Image-1024x536.png 1024w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Maitreyi-Member-story-Website-Featured-Image-768x402.png 768w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Maitreyi-Member-story-Website-Featured-Image.png 1200w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t<\/div>\n\t\t\t\t<div class=\"elementor-portfolio-item__overlay\">\n\t\t\t\t<h3 class=\"elementor-portfolio-item__title\">\n\t\tMaitreyi Viswanathan\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t<article class=\"elementor-portfolio-item elementor-post  post-28850 post type-post status-publish format-standard has-post-thumbnail hentry category-blog category-naf\" role=\"listitem\">\n\t\t\t<a class=\"elementor-post__thumbnail__link\" href=\"https:\/\/www.ataxia.org\/amplifying-the-voice-of-ataxians-feedback-from-members-of-the-naf-community-on-ataxia-symptoms\/\">\n\t\t\t\t<div class=\"elementor-portfolio-item__img elementor-post__thumbnail\">\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"157\" src=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-300x157.png\" class=\"attachment-medium size-medium wp-image-28855\" alt=\"\" srcset=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-300x157.png 300w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-1024x536.png 1024w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3-768x402.png 768w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Member-Story-Featured-Image-3.png 1200w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t<\/div>\n\t\t\t\t<div class=\"elementor-portfolio-item__overlay\">\n\t\t\t\t<h3 class=\"elementor-portfolio-item__title\">\n\t\tAmplifying the Voice of Ataxians: Feedback from members of the NAF community on Ataxia Symptoms\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t<article class=\"elementor-portfolio-item elementor-post  post-27254 post type-post status-publish format-standard has-post-thumbnail hentry category-blog category-member-stories\" role=\"listitem\">\n\t\t\t<a class=\"elementor-post__thumbnail__link\" href=\"https:\/\/www.ataxia.org\/ana\/\">\n\t\t\t\t<div class=\"elementor-portfolio-item__img elementor-post__thumbnail\">\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"157\" src=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Ana-Member-story-Website-Featured-Image-300x157.png\" class=\"attachment-medium size-medium wp-image-27256\" alt=\"\" srcset=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Ana-Member-story-Website-Featured-Image-300x157.png 300w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Ana-Member-story-Website-Featured-Image-1024x536.png 1024w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Ana-Member-story-Website-Featured-Image-768x402.png 768w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2025\/10\/Ana-Member-story-Website-Featured-Image.png 1200w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t<\/div>\n\t\t\t\t<div class=\"elementor-portfolio-item__overlay\">\n\t\t\t\t<h3 class=\"elementor-portfolio-item__title\">\n\t\tAna\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t<article class=\"elementor-portfolio-item elementor-post  post-28653 post type-post status-publish format-standard has-post-thumbnail hentry category-blog category-clinical-services category-education\" role=\"listitem\">\n\t\t\t<a class=\"elementor-post__thumbnail__link\" href=\"https:\/\/www.ataxia.org\/ataxia-med-news-february-2026\/\">\n\t\t\t\t<div class=\"elementor-portfolio-item__img elementor-post__thumbnail\">\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"157\" src=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Med-News-Featured-Image-300x157.png\" class=\"attachment-medium size-medium wp-image-28820\" alt=\"\" srcset=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Med-News-Featured-Image-300x157.png 300w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Med-News-Featured-Image-1024x536.png 1024w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Med-News-Featured-Image-768x402.png 768w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Med-News-Featured-Image.png 1200w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t<\/div>\n\t\t\t\t<div class=\"elementor-portfolio-item__overlay\">\n\t\t\t\t<h3 class=\"elementor-portfolio-item__title\">\n\t\tAtaxia Med News &#8211; February 2026\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t<article class=\"elementor-portfolio-item elementor-post  post-28776 post type-post status-publish format-standard has-post-thumbnail hentry category-advocacy category-blog\" role=\"listitem\">\n\t\t\t<a class=\"elementor-post__thumbnail__link\" href=\"https:\/\/www.ataxia.org\/advocating-for-accessibility-in-st-louis\/\">\n\t\t\t\t<div class=\"elementor-portfolio-item__img elementor-post__thumbnail\">\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"300\" height=\"157\" src=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Shannon-Featured-Image-300x157.png\" class=\"attachment-medium size-medium wp-image-28777\" alt=\"\" srcset=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Shannon-Featured-Image-300x157.png 300w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Shannon-Featured-Image-1024x536.png 1024w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Shannon-Featured-Image-768x402.png 768w, https:\/\/www.ataxia.org\/wp-content\/uploads\/2026\/05\/Shannon-Featured-Image.png 1200w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t<\/div>\n\t\t\t\t<div class=\"elementor-portfolio-item__overlay\">\n\t\t\t\t<h3 class=\"elementor-portfolio-item__title\">\n\t\tAdvocating for Accessibility in St. Louis\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t<\/div>\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":"<p>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 <a class=\"MoreInfo\" href=\"https:\/\/www.ataxia.org\/advocating-for-accessibility-in-st-louis\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":8,"featured_media":28855,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[517,695],"tags":[],"class_list":["post-28850","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","category-naf"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Amplifying the Voice of Ataxians: Feedback from members of the NAF community on Ataxia Symptoms - National Ataxia Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ataxia.org\/amplifying-the-voice-of-ataxians-feedback-from-members-of-the-naf-community-on-ataxia-symptoms\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Amplifying the Voice of Ataxians: Feedback from members of the NAF community on Ataxia Symptoms - National Ataxia Foundation\" \/>\n<meta property=\"og:description\" content=\"The National Ataxia Foundation (NAF) led a survey of people with\u00a0Ataxia and their families in January 2025. 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