The National Organization for Tardive Dyskinesia (NOTD), a 501(c)(3) nonprofit charity, was started by Kathleen A. Shea in 2019 in response to the need for a national organization for this condition that disables so many. Ms. Shea began exhibiting symptoms of orofacial TD, with burning oral tardive pain, while withdrawing from Seroquel, which she had taken for fourteen years for insomnia. Her experience interacting with others with TD and tardive syndromes opened her eyes to the devastation this disorder can cause.
Ms. Shea has an educational background in public health and epidemiology, so she has a passion for people and healthcare. She has used this passion to spearhead this first-ever nationwide organization for tardive dyskinesia. The organization has identified the following services that it can provide to those who suffer from the disorder and those who treat it:
- Advocacy – The organization advocates on behalf of the greater than the estimated 750,000 people in the U.S. who have some form of TD. In 2022 and 2023, Tardive Dyskinesia Awareness Week, (TDAW) the first full week of May, was our biggest effort to date to advocate for the TD community by flying people with TD to Washington, DC, to meet with Congressional staffers involved in forming health policy (please read more on our homepage).
- Education (for physicians, patients, loved ones and the public) – There is widespread misunderstanding in the medical community that only people with severe mental disorders who take antipsychotic medicines can develop TD. In reality, TD can afflict those who take a wide variety of pharmaceutical drugs. The organization’s website aims to offer a one-stop online resource to educate about the disorder.
- Awareness – The organization reaches out to the community at large through social media and through appearances at conferences and seminars to help increase TD awareness.
- Community building – The organization facilitates the building of the TD community by bringing together those who suffer from the disorder, those who research it, those who treat it, and others who are impacted by it through online webinars and social media.
- Patient and Caregiver Support — We offer online support groups for those with TD and respiratory dyskinesia (RD); a caregiver support group will be added. We offer a smartphone TD Symptom Tracker for convenient monitoring and reporting of symptoms.
Our Founder’s TD Story
Though Ms. Shea began experiencing orofacial movements and oral sensory pain in late June 2018 when she started withdrawing from Seroquel (which she had taken for fourteen years for insomnia as mentioned above), she was not diagnosed with TD until October 2018. She began taking amantadine in October 2018, with no success. A naturopath prescribed high-dose chelated manganese for her TD a month later. In six weeks her oral movements were completely gone and her tardive pain was minimal. She was overjoyed.
Seven weeks after starting the manganese, on Christmas Day 2018, she began having difficulty walking, intermittently. On New Year’s Eve, her uncoordinated walking ability became twenty-four hours a day. She also developed intermittent full-body tremors. She stopped the manganese that day. She had developed manganese toxicity. Within three days her tremors subsided, but she walked extremely slowly for weeks and her gait remained ataxic for over eight months. She now is cane-free and walking normally. She also had difficulty speaking for three months due to the manganese toxicity. She is grateful to have recovered as manganese toxicity often causes permanent damage to the basal ganglia of the brain, particularly the globus pallidus. When she stopped the manganese, her involuntary movements and sensory pain returned. She also has experienced Vitamin B6 toxicity after her first dose of B6 P5P, 200mg, confirmed by a blood plasma test, which fortunately resolved in a week.
After starting the process of applying for nonprofit status for NOTD, her autistic brother developed obvious symptoms of TD, affecting the head/neck and mouth with vocal tics, most likely from many years on risperidone. He now takes Ingrezza for his TD and has shown remarkable improvement.
Movement Disorders Policy Coalition podcast with our Founder (8 mins.): In this brief episode from May 2020, Kathleen Shea explains how her experience with tardive dyskinesia motivated her to create an organization to support other patients with TD.
Kathleen A. Shea, Founder and President, Chairman, Board of Directors
Kathleen holds a bachelor’s degree in Molecular and Cellular Biology from the University of Arizona. She has also earned masters’ degrees in Library and Information Science, and Public Health with an emphasis in Epidemiology, from the University of South Florida and the University of Miami, respectively. She and her brother both have tardive dyskinesia. She is the author of “Catastrophic Withdrawal: An Insomniac’s Attempt to Withdraw from Seroquel and How it Dramatically Altered Her Life”, which was released in December 2020. Kathleen is also a veteran of the U.S. Navy. She lives in New Port Richey, Florida, near her family.
Bill Cote, Senior Director and Treasurer, Board of Directors
Bill holds a bachelor’s degree in Non-fiction Creative Writing from the University of Southern New Hampshire. He has worked as a grant writer for the National Forensic Science Technology Center and the Coalition for the Homeless of Central Florida. He is author of several chapters of A Simplified Guide to Forensic Science and the children’s book, The Simple Little Salvation Story. He lives in Hudson, Florida, near his family.
Linh Nguyen, Executive Assistant, and Secretary, Board of Directors
Linh holds a Bachelor of Arts in Early Childhood Education from Ashford University. She is studying for a Master of Science in Applied Behavior Analysis degree at National University. She has spent many years advocating and volunteering her time for various causes. She began researching and advocating for the cause of TD when she developed TD a few of years ago. She lives in Gallatin, TN with her significant other and their Labrador Retrievers, Seven and May.
Ruth Ann Rich, Creative Director, Officer, Board of Directors
Ruth Ann is a former stand-up comedian and actor. She studied theater at James Madison University. A gifted speaker, she passionately advocates for the cause of TD, having managed the condition for more than a decade.
She and her 12-year-old son Eian were the driving force behind our upcoming children’s book. Ruth Ann lives in Virginia Beach, VA with her husband and son