National Organization for Tardive Dyskinesia

07/14/2026

NOTD's new podcast, "TD: The Whole Story," just launched! Our first episode is about respiratory dyskinesia (RD) and features an engaging discussion with noted psychiatrist, Craig Chepke, MD, and Amy Youngquist, MPA, who bravely shares her story of living with this little-known but debilitating form of TD. View it on YouTube: https://www.youtube.com/watch?v=Hy5MI5acKlA (also on Spotify: https://open.spotify.com/episode/53bTp0sAjMU61cUJUN4eCB and Apple Podcasts: https://podcasts.apple.com/us/podcast/struggling-to-breathe-respiratory-dyskinesia-demystified/id6790525731?i=1000776735050)

*One day you're a successful CEO, the next you can barely breathe.*...

06/15/2026

Carnie Wilson, of Wilson Phillips fame, and TD advocate, interviews Athena Kabylafkas and Ray Merenstein of NAMI Colorado at NAMICon 2026. Athena has TD and they shared a powerful message about the importance of educating others about TD. The large Ballroom was packed to hear the conversation.

05/28/2026

New milestone! 1012 followers! Thank you all who have joined us.

We are currently at in Atlanta. So many wonderful people have stopped by our booth who have been inquisitive and supportive.

What a great experienc so far.

05/22/2026

Wow!!! We are but just 1 away from having 1000 followers. I have been watching the number grow over the past few months and I am so glad you have added us to the content you see on your feed.

As a quick update, NOTD with be attended NAMIcon in Atlanta, GA, May 27-29. If you are attending, please stop by our booth, have a chat and take a look at what we have been working on.

NAMI

05/09/2026

Hello! I’m April, the TD Support Specialist at NOTD. I am 1 of approximately 800,000 people who live with TD.

I have been part of the groups that visit Capitol Hill to educate our law makers and advocate for us living with TD. We let them know that it is important to vote YES for laws that will fund the education of clinicians about TD and early screenings.

It has been and honor and a privilege to visit Capitol Hill four times to continue advocating. When meeting people, I share my journey living with TD and how it has impacted my life. That includes the bad and the good impacts.

If you are wondering what the good impacts could be, I’m happy to tell you!Having the roll with in NOTD has provided a purpose I never knew I had. When I developed TD, I had no idea that my world would be turned upside down. Through it all, finding community and information through NOTD, my life was turned right side up.

Now, I help others going through their journey. That is the purpose I didn’t know I had. It is an amazing honor to provide a safe space for those who need support.

05/08/2026

The New York state capitol building is lit blue this week for TD Awareness Week!

05/08/2026

05/08/2026

Matt is a TD Advocacy Champion who we are so grateful to have on our side.

05/08/2026

TD affects more than just the physical. The impact is real in all aspects of a person's life living with TD.

05/06/2026

Fear of TD's uncontrollable movements can be a major impact on medication adherence. It is always advised to discuss this with your prescriber.