Here are some highlights of our past four years:
Education
- Provided our first webinar, “Treatments for Tardive Syndromes,” with noted TD expert, Dr. Stewart Factor, Director of the Movement Disorders program at Emory University School of Medicine
- Presented virtual TD Lunch and Learn during Mental Illness Awareness Week 2022 for NAMI-Pinellas County, Florida affiliate
- Received funding to develop “A Patient’s Guide to Tardive Dyskinesia” book (in progress)
- Received a grant to create a children’s book about TD; received testimonial from TD expert Dr. Rakesh Jain – coming soon!
- Produced video, “Living with Tardive Dyskinesia,” with a professional filmmaker which appears on our homepage
- Presented webinar to Depression and Bipolar Support Alliance (DBSA) of California
Patient support
- Started offering TD Support Groups online via Zoom® in 2022
- Added support group for Respiratory Dyskinesia in 2023
- Developed TD Symptom Tracker smartphone app, available for both iPhone and Android devices
- Partnered with a Genoa Healthcare pharmacy to facilitate assistance in obtaining free Ingrezza and Austedo at the patient’s local Genoa pharmacy across the U.S.
- Created TD medical ID cards with lanyards and continue to distribute for free to those with TD (write to us at info@tdhelp.org if you want one)
- Started a petition to the FDA to put a black box warning regarding TD risk on all atypical antipsychotics
Advocacy
- Brought 14 individuals to Washington, DC, in 2023 (10 in 2022) who either live with TD or care for someone who does. Met with Congressional staff to raise awareness about TD and its impact on quality of life.
- Endorsed letter to U.S. Department of Health and Human Services (HHS) encouraging HHS to prioritize screening, diagnosing and treating TD and producing a report to Congress regarding TD in 2021 and 2022
- Supported bipartisan bill to fund and establish a Neuroscience Center of Excellence at the Food and Drug Administration.
- Worked with the Movement Disorders Policy Coalition to encourage insurance plans to add or keep the two FDA-approved medications on their formulary
- Joined the American Brain Coalition in 2020, a nonprofit representing the 50 million Americans with disabling brain disorders on Capitol Hill
- Encouraged continued funding of NIH’s BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative. The BRAIN Initiative was funded at $620 million in FY 2022.
Awareness
- Exhibited virtually at the following conferences:
- International Parkinson and Movement Disorders Society 2020 and 2021 Congress
- American Psychiatric Association Annual Meeting 2021
- American Neurological Association 145th Annual Meeting 2020
- Exhibited in person at the following conferences:
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- Clinical Neurological Society of America 47th Annual Meeting 2022
- American Academy of Physician Associates 2022
- Neuroscience Education Institute Congress 2022
- American Psychiatric Association 2023
- Psych Congress 2023
- Participated in a podcast for TD Awareness Week 2020, sponsored by the Movement Disorders Policy Coalition
- Participated in podcast about TD with noted expert Dr. David Charles of Vanderbilt University
- Appeared in Health Monitor Network’s “Guide to Living with Tardive Dyskinesia”
- Appeared on WebMD.com’s online collection of tips from those living with TD (with several of our NOTD friends)
- Boosted Facebook post of TD patient telling his story during TD Awareness Week 2020, reaching 4,000 people
- Received Google Grant to pay for Google advertising
Please consider helping us continue our mission as we begin our 5th year!
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