{"id":13550,"date":"2026-09-15T08:48:43","date_gmt":"2026-09-15T13:48:43","guid":{"rendered":"https:\/\/president.missouri.edu\/blog\/?p=13550"},"modified":"2026-09-15T08:48:43","modified_gmt":"2026-09-15T13:48:43","slug":"on-the-offensive-against-rare-disease","status":"publish","type":"post","link":"https:\/\/president.missouri.edu\/blog\/2026\/09\/15\/on-the-offensive-against-rare-disease\/","title":{"rendered":"On the offensive against rare disease"},"content":{"rendered":"\n
\"The<\/a>
The Ruth Family is joined by members of the new Center for Translational Neurogenetics inside Mizzou\u2019s Roy Blunt NextGen Precision Health building. (Back row) Azadeh Safaei, Dr. David Arnold, Saanvi Gowda, Sophia Marchetti, Kasey Ruth, Silvano Bond, Dr. Ryan Castoro, Dr. Andrea Sierra-Delgado, (front row) Kamdyn Ruth, John Ruth<\/figcaption><\/figure>\n\n\n\n

John Ruth, BSBA \u201908, is a Mizzoumade leader and former student-athlete. Starting out as a Tiger Football walk-on, he helped his team secure a Cotton Bowl victory in 2008 before graduating and launching a successful finance career. He and his wife Kasey, BSEd \u201908, started their family in John\u2019s hometown of Jefferson City, where they welcomed their daughter, Kamdyn, in 2013.<\/p>\n\n\n\n

After Kamdyn was born and following years of genetic testing, the family learned she had an ultra-rare neurodevelopmental disorder called Baker-Gordon Syndrome, a mutation of the SYT1 gene and also known as SYT1-Associated Neurodevelopmental Disorder. Determined to find answers and help others also navigating a rare disease diagnosis, the Ruths established the Genetic Autism Alliance nonprofit to accelerate therapeutic research for genetic disorders. They also looked to their alma mater<\/a>, where the commitment to excellence inspires achievements across the university, from wins on the field to transformative discoveries in research.<\/p>\n\n\n\n

\"(Left)<\/a>
(Left) John and Kasey Ruth on Faurot Field in 2006, (right) the Ruth Family in 2024<\/figcaption><\/figure>\n\n\n\n

Now, uniting the Ruths\u2019 passion, Mizzou\u2019s world-class faculty and significant support from Missouri leaders, we\u2019re launching an extraordinary initiative that will save and improve countless lives, including those of Missouri\u2019s youngest patients.<\/p>\n\n\n\n

Thanks to an incredible $10 million investment from the State of Missouri and the support of the Genetic Autism Alliance, we are pleased to announce the\u00a0Center for Translational Neurogenetics<\/a><\/u>. Led by Mizzou physician and researcher\u00a0Dr. David Arnold<\/a><\/u>, executive director of the NextGen Precision Health initiative, this new center further establishes Mizzou as a national hub of breakthrough therapies for the rarest diseases.<\/p>\n\n\n\n

Dr. Arnold was recruited to Mizzou from Ohio State University and is among the top neuroscience researchers in the country. As part of an international research team, he was recently the first physician in the world to deliver a pioneering new ALS therapy for an MU Health Care patient, and he will continue to break new ground with the Center for Translational Neurogenetics.<\/p>\n\n\n\n

Using NextGen\u2019s state-of-the-art resources, our faculty will create rapid, scalable treatments for rare diseases, including Baker-Gordon Syndrome. Bringing together Mizzou\u2019s proven strengths in translational research and the latest in gene therapy, the center will deliver faster diagnoses while also developing tailored care that isn\u2019t available anywhere else.<\/p>\n\n\n\n

John, Kasey and their family are thrilled at what will be achieved through the Center for Translational Neurogenetics and the hope it offers for the 1 in 10 people affected by a rare disease. Mizzou is proud to uphold our land-grant mission by advancing excellence in research that helps kids, and all Missourians, lead happy, healthy lives.<\/p>\n\n\n\n

\u2014 Mun<\/p>\n","protected":false},"excerpt":{"rendered":"

John Ruth, BSBA \u201908, is a Mizzoumade leader and former student-athlete. Starting out as a Tiger Football walk-on, he helped his team secure a Cotton Bowl victory in 2008 before graduating and launching a successful finance career. He and his wife Kasey, BSEd \u201908, started their family in John\u2019s hometown of Jefferson City, where they […]<\/p>\n","protected":false},"author":21,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[3],"tags":[],"class_list":["post-13550","post","type-post","status-publish","format-standard","hentry","category-blog"],"acf":[],"_links":{"self":[{"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/posts\/13550","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/users\/21"}],"replies":[{"embeddable":true,"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/comments?post=13550"}],"version-history":[{"count":5,"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/posts\/13550\/revisions"}],"predecessor-version":[{"id":13557,"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/posts\/13550\/revisions\/13557"}],"wp:attachment":[{"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/media?parent=13550"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/categories?post=13550"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/president.missouri.edu\/blog\/wp-json\/wp\/v2\/tags?post=13550"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}