National Spasmodic Torticollis Association

We had received some inquiries about the Covid vaccine as to whether it is recommended that people with cervical dystonia take it. The following is a statement from out Emeritus Medical Advisor, Dr. Drake Duane. I recommend patients get the Covid vaccine. Unlike previous immunizations it does not contain attenuated forms of the virus but rather a genetic sub code to the RNA of the virus. Arm pain for a few hours is the most common side effect. Drake D Duane, MS, MD... Arizona Dystonia Institute Scottsdale, AZ See more

There is a special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. The following is information on the webinar. COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community Date: January 15, 2021... Time: 2:00 - 2:45pm ET REGISTER NOW https://rarediseases.org/covid-19-vaccines-update-fda-and-/ The National Organization for Rare Disorders (NORD), along with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, is pleased to host a special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. FDA recently granted Emergency Use Authorization (EUA) for the Pfizer and Moderna COVID-19 vaccines. Questions that will be addressed include: What do the EUAs of these vaccines mean for the rare disease community? When might other vaccines receive an EUA? Are there special considerations for the rare disease community with respect to the COVID-19 vaccines? What role does CDC play with respect to vaccines? Additional questions from members of the rare community will be collected during the registration period and addressed in the live webinar. This webinar is intended for patients, caregivers, advocates and the general public. For those unable to join live, this webinar will be recorded and a viewing link sent to all registrants for on-demand viewing.

About a week ago we were informed by a friend of the NSTA that Howard Thiel, a longtime advocate and friend of the dystonia community passed away on December 29, 2020. Howard served on the NSTA Board of Directors and as Executive Director throughout the 1990’s. He later founded ST/Dystonia Inc. and continued to be there for people who need information and support. He is remembered for his willingness to help others, persistence for better treatments options, and support for r...esearch to ultimately find a cure. In addition to that, I will remember him for his easygoing personality and witty sense of humor. We thank him for his countless efforts that benefited the ST community. We send our condolences and warm thoughts to Howard’s family, friends and all those in the dystonia community that have known him. Below is a link to Howard's obituary. If you knew Howard, please let the family know how he made a positive impact in your life. https://www.legacy.com//jsonli/name/howard-thiel-obituary

Happy New year from all of us from the NSTA! It is the first day of 2021. While the new year marks a new start and a welcoming chance to for a fresh start, let us remember that there are some things that still carry over from 2020. We are still battling a pandemic. Let 2021 mark the beginning of all of us collectively agreeing to wear masks in public, sanitize our hands often and maintain 6 feet from each other so we as we continue to live our daily lives. We can beat this t...ogether. Have a Happy New year full of good health, prosperity in the presence of people you love. We look forward to continuing to provide information and support this year. If you have any questions, please email us at [email protected].

During the 2008 AAN meeting in Chicago, dear friend and former President of the NSTA Nancy Muller was there exhibiting for the Tremor Action Network. We went out for a nice walk around the city together catching up and talking shop. Stopped by a hotdog place for something to eat. I think we got back to our hotels around 2:00 am. I really enjoyed that time together.

Vice President, Diane Truong representing the NSTA at the 2008 American Academy of Neurology meeting in Chicago, Illinois.