About NSTA - National Spasmodic Torticollis Association

NSTA Online Support and Presentation

11 Aug

The NSTA is about to embark on a whole new journey as we continue to support its mission to provide information and support to people whose life has been affected by spasmodic torticollis and cervical dystonia. The NSTA will start hosting online support group meetings and presentations starting in October.

The meetings will be hosted through Zoom. This will enable the NSTA to host video conferencing, chat, phone, webinars, and online events. For those who are unfamiliar with this program, you can check out their website at www.zoom.us.

NSTA East Coast Support Group Meeting

The first online support group meeting will take place on Saturday, October 9th, 2:00 p.m. – 3:00 p.m. Eastern Time. This support group is for people living on the East Coast. If you live in Connecticut, Delaware, Florida, Georgia, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, North Carolina, Pennsylvania, Rhode Island, South Carolina or Virginia, you are welcome to participate. There will be no guest speaker. We will have an open discussion for an hour where we will inform you on what the NSTA is currently working on and get a feel of what the participants would like to see in future meetings.

Attending the meeting does not require you to participate (speak). We understand there are people that want to attend but are not ready to speak. If you are not comfortable with having your camera on, you can turn it off. Or you can join us by phone where you can listen to the meeting. You are with people who understand, respect your feelings. We hope that with time, you will feel comfortable to get involved with this discussion.

With this being the first time hosting a group meeting online, it is expected that some unexpected things will occur that may prevent the meeting from running smoothly. I have been so used to hosting group meetings in person that I am not sure how different it will be to engage the group through this platform. I will do my best to keep the conversation going where everyone has time to speak.

To register for this meeting, contact me (Justin) at JgaquinesNSTA@aol.com and I will email you a link where you can register. A passcode will be provided to you in order to log into the meeting. There are a limited number of people we can have on the meeting so please RSVP to secure your spot.

Dr. Drake Duane – “What 1000 Patients have Taught Me about Their ST”

Dr. Duane is no stranger to the dystonia community or the NSTA. For many years, he has generously given his time to support the mission o the NSTA. He has served on the Medical Advisory Board and as the Chairman of the Medical Advisory Board. Dr. Duane has attended annual symposiums as a guest speaker and as moderator. He has answered questions from people contacting the NSTA about their medical situation and has written articles for the magazine. And now, Dr. Duane is going to be our first presenter online as he discusses his experience with treating cervical dystonia.

Dr. Duane’s online presentation will take place on Saturday, October 23rd 11:00 a.m. Pacific Time. If you are interested in attending this presentation, please email the NSTA at info@torticollis.org. I will email you a link where you can register for the event. A passcode will be provided to you in order to log into the meeting. As with the East Coast support group meeting, there are a limited number of people that can register, so please RSVP to secure your spot.

I want to take the time to thank Merz Pharmaceuticals GmbH for their continuous support.

I also want to take the time to thank Revance Therapeutics for their part in helping the NSTA take the next step towards providing information and support through a video conferencing format. Our friends at Revance have gone up and beyond the definition of support. They have extended their staff and resources to teach VI and I about Zoom and how to organize these meetings. This enabled us to be more comfortable with hosting the two before mentioned events. From the NSTA and all the people we serve, thank you Revance Therapeutics for helping us take the mission of the NSTA to the next level.