Welcome to TDhelp.org

Thank you for visiting TDhelp.org, the online home of the National Organization for Tardive Dyskinesia (NOTD) — the only non-profit charity solely devoted to helping those with tardive dyskinesia.

This website provides numerous resources we hope you will find helpful such as discussion of self-help techniquespharmaceutical and alternative treatments, information on our virtual TD support groups, patients’ personal stories, educational videos, and much more. Remember, you’re not alone in this journey. We are by your side bringing hope and help to you and all those suffering with tardive dyskinesia.

Help us help those with Tardive Dyskinesia

Become a member of NOTD today

Whether you have TD, or a friend, patient or loved one does, just a small contribution will help NOTD make a big difference for those whose lives are impacted by this often debilitating, medication-induced disorder. Contribute just $5 per month and as a member you’ll receive special publications, exclusive online members-only meetings to discuss TD topics, participation in advocacy activities, and more.

Become a member today

Your small monthly donation will help us:

Become a member today

Shake Rattle & Rock header image
Shake Rattle & Rock talent show image

This wonderful, illustrated children’s book helps young people understand the challenges parents or grandparents face because of TD:

  • Makes TD less frightening for children
  • Helps kids feel less alone when dealing with a loved one’s TD

“Until now, we have had no means of educating children about TD and giving them support. Good news – we now have such a resource!”
– Rakesh Jain, M.D., M.P.H.

Buy the Book:

Shake, Rattle, and Rock: Helping Children Understand a Loved One's TD
Story: Ruth Ann Rich and Eian Rich; Illustrations: Maybelle Dela Cruz

"Shake, Rattle & Rock" Book Reviewed by Prestigious Psychiatrist

TD Symptom Tracker App Now Available!

NOTD does not engage in the practice of medicine. The organization is not a medical authority. In all cases, NOTD recommends that you contact a physician regarding any course of treatment for tardive syndromes.

TD symptom tracker app icon
  • Easily record involuntary movements
  • Chart the effect of TD treatments
  • Visualize symptom trends over time
  • Email/text results to your physician(s)
  • Record emotions such as anxiety, depression, or happiness
  • Track lifestyle factors such as sleep, exercise, and stress

TD News

TD Advocacy Update: Federal telehealth bill to include guidance on TD screening

We are anticipating that Congress will pass legislation at the end of this year to extend COVID-era telehealth benefits for those on Medicare for two more years. While COVID helped revolutionize healthcare by bringing it into most people’s homes, telehealth can make it difficult for practitioners to properly screen for drug-induced movement disorders like TD.

That’s why NOTD has been advocating to Federal law makers that practitioners who care for those taking antipsychotics should receive guidance regarding screening for movement disorders in a telehealth environment. The current bill making its way through Congress includes language explaining the importance of periodic screening for medication-induced movement disorders, best practices for screening for these disorders via telehealth, and clarification regarding how to account for screening in evaluation and management code selection. (Thanks to Neurocrine Biosciences’ Government Affairs Division for their efforts in this regard.)

By including this TD-related education/guidance with the telehealth bill, we will hopefully mitigate the impact that telehealth can have on thorough TD screening and diagnosis. 

Integrated AIMS reminders to assist in early detection and treatment of TD

Amalgam Rx, a healthcare tech company, has developed software that embeds AIMS assessment reminders in the electronic health records of patients at risk of developing Tardive Dyskinesia. TD experts generally advise that the Abnormal Involuntary Movement Scale, or AIMS, be given to patients taking antipsychotics and other dopamine-blocking medications every six months and more frequently if at a high risk for TD. Amalgam Rx’s reminder prompt is triggered when patients are seen who need regular AIMS screenings. At present, it is thought the AIMS test is underutilized, and that TD often goes undiagnosed, with approximately 60% of sufferers unaware they have the condition. The Amalgam Rx AIMS reminder tool will aid in early detection and diagnosis for patients. More information is available at: https://amalgamrx.com/aims/ and on-demand webinar

FDA approves new single-tablet strengths of once-daily AUSTEDO® XR

5/30/24 – Following the U.S. Food and Drug Administration’s (FDA) approval of once-daily AUSTEDO XR (deutetrabenazine) extended-release tablets in February 2023, the FDA has approved new single-tablet strengths of AUSTEDO XR. AUSTEDO XR is now available as one pill, once-daily across a range of effective doses: 24, 30, 36, 42, 48 mg/day tablet strengths offering flexibility to tailor individual treatment regimens for effective and tolerable TD and HD chorea symptom control. In addition, AUSTEDO XR can be taken with or without food. For more information on side effects and safety of the XR and standard AUSTEDO drugs, visit: Medication Guide.

New antipsychotic that doesn’t block dopamine receptors could be approved this September

KarXT (xanomeline-trospium) is a new antipsychotic drug in Phase 3 testing that acts on the muscarinic receptors instead of directly blocking dopamine receptors. For those concerned with developing TD, this is good news because the central theory of TD development entails blocking of the D2 dopamine receptors. KarXT still decreases dopamine availability in the brain by activating muscarinic receptors instead. If KarXT is approved by the FDA it would be the first antipsychotic since their first use in the 1950s (in the U.S.) that wouldn’t act by blocking dopamine receptors which can cause involuntary movements. KarXT is being developed by Karuna Therapeutics and is scheduled for an FDA decision on September 26, 2024. 

Teva Pharmaceuticals presents first real-world data from IMPACT-TD Study at Psych Congress Elevate 2024

An interim analysis of 286 patients with varying levels of TD severity reported that TD has a multidimensional impact, even on patients with mild TD. Clinician-reported IMPACT-TD findings show: “98% of patients experience the impact of TD in some aspect of their quality of life; 83% of patients experience moderate to severe impact across various quality of life domains, including social (59%), psychological/psychiatric (70%), physical (53%) and vocational/ educational/recreational (57%); 54% and 61% of patients with “very mild” and “mild” TD severity based on CGIS-TD (Clinical Global Impression of Severity of TD), experience moderate to severe impact on their quality of life. Review more key findings from this important ongoing study.

NOTD joins forces with NAMI Citrus County for in-person TD lecture/screening event

Bill Cote, Sr. Director of NOTD, provided a TD Talk to members of the National Alliance of Mental Illness (NAMI), Citrus County, FL on May 14 from 7pm-8pm. The event was held at the county’s local YMCA and included in-person screenings for attendees by psychiatric nurse practitioner Andrew Wargo PMHNP-BC of Concord Health based in Clearwater, FL.